RSS NEWS FEED [CTRL-F to "search"]

includes feeds from: Disability.gov, MilitaryHomefront, DisabilityScoop,
PRNewswire, AUCD, UCP, The ARC, Autism Speaks
articles to display: 20 | 40 | 60 | all
December 21, 2014

Obama Signs ABLE Act Into Law - Autism Speaks - Advocasy

Tax-free savings allowed for disability expenses

December 21, 2014

WASHINGTON, DC -- President Obama has enacted the Achievinga Better Life Experience Act (ABLE) which will allow tax-free savings accounts to help individuals and families cover lifetime disability expenses. ABLE was a part of HR.5771, a tax-extender bill signed into law without comment by the President.

The ABLE Act was sponsored in theSenate by Senators Bob Casey (D-PA) [left] and Richard Burr (R-NC) and attracted 76 cosponsors. It passed the Senate 76-16 just days after clearing the House on a 404-17 vote.

ABLE will allow individuals will disabilities to protect or qualify for Supplemental Security Income (SSI) and Medicaidby eliminating a $2,000 cap that now applies toconventional savings accounts. The federal government must first determine eligible expenses before the accounts become available, which is expected late in 2015.

"Millions of Americans are currently living with disabilities, and many of them have also had to endure significant uncertainty about their ability to cover basic expenses in the future," said Casey. "They have struggled to keep up with the rising cost of housing, transportation and medical assistance. A growing number of Americans with disabilities are outliving their parents, and are forced to rely on government assistance when family support disappears. This is partly because Americans with disabilities have not had the same incentives to save that other Americans enjoy.

"The ABLE Act changes this unfair situation by creating tax-advantaged plans for disability-related incentives, and by allowing Americans with disabilities to save without losing eligibility for government programs," he added.

Casey credited Autism Speaks, the National Down Syndrome Society (NDSS) and other advocacy groups for helping drive support for ABLE. The bill was renamed in honor of Steve Beck, a former Board member of NDSS and driving force behind the bill who died suddenly in early December.

"Some have called the ABLE Act the most significant piece of legislation affecting the disabled since passage of the American Disabilities Act nearly 25 years ago," said Burr."Families of severely disabled children came to us expressing the critical need for an easy way to save for their child's future expenses, especially since many Americans with Down Syndrome and autism are now outliving their parents.

"Most middle-class families don't have the money to spend on lawyers and financial planners to set up sophisticated trusts to make sure that their disabled child will be OK long after they are gone.What's worse, current federal law actually discourages parents from putting any assets in the name of their disabled child in fear of disqualifying them from federal programs down the road," he added.

"It's utterly unacceptable that our current laws doom a child born with a disability to a lifetime of poverty and dependence.This is especially unfortunate when a parent or other family member has the resources and the desire to save and plan for that child's future expenses but are advised by lawyers and planners not to.The ABLE Act will take the first critical step in ending this injustice."

December 19, 2014

With Caregiver Pay Hike, States Warned About ADA Obligations - DisabiltyScoop
As new rules roll out mandating better pay for in-home care workers, federal officials say states must not compromise the rights of people with disabilities in the process.

Tech Firm Sees Benefit From Employees On The Spectrum - DisabiltyScoop
A global technology firm that's committed to hiring hundreds with autism says the move isn't about disability, but rather an effort to harness skills.

ABLE Act is Law! - Autism Speaks - Advocasy

President Obama signs bill allowing tax-free savings for disability expenses

December 19, 2014

WASHINGTON, DC -- President Obama signed into law the ABLE Act today, following a bipartisan vote in the Senate earlier this week. The signing culminated an eight-year campaign to gain approval for tax-free savings accounts to help individuals and families finance their longterm disability needs.

Sponsored by Senators Bob Casey (D-PA) [left] and Richard Burr (R-NC), the bill attracted unusual bipartisan support, including co-sponsorships byboth Senate Majority Leader Harry Reid and Minority Leader Mitch McConnell. ABLE, or the Achieving a Better Life Experience Act, was voted out of the House last week 404-17.

"Autism Speaks is grateful for the tireless effort of Senators Casey and Burr who joined our champions in the House to build extraordinary bipartisan support for the bill," said Autism Speaks President Liz Feld. "We also thank Senators Reid and McConnell for their early support and leadership to make this a priority in the closing days of this Congress. It also could not have been done without the Senate Finance Committee leadership provided by Ron Wyden (D-OR) and Orrin Hatch (R-UT), whose long-standing support for the bill was vital.

“Passage of this bill through the House and Senate shows that Congress can work to accomplish big things and that there is no greater force than an idea whose time has come. Finally, this could not have been done without the power of individuals coming together to advocate for good policy that makes sense.”

ABLE amends the federaltax code to allow tax-free savings accounts to help finance disability-related needs. They are similar to Section 529 college savings accounts and eliminate, for ABLE accounts, the current $2,000 cap on savings for individuals with disabilities.

Under previous law, people with disabilities who saved more than $2,000 fail to qualify orrisk the loss of their Supplemental Security Income (SSI), Medicaid and other benefits. Funds deposited in ABLE accounts would have to be used exclusively for disability-related expenses.If signed into law, ABLE accounts would not become available until later next year because of the need for the Internal Revenue Service to define qualifying expenses and complete other regulatory steps.

"For years, we've created incentives in the tax code to save for higher education or to save for retirement," said Casey. "Now at long last for Americans who have a disability, those families will be able to save – whether it's to pay for health care or education, the basic expenses that these individuals with disabilities have wanted to save for for many years.

"We believe --and this is what undergirds the ABLE Act--that people with a disability have a lot of ability to live a full life if we give them the tools," Casey added. "One of those tools is an incentive to save for the future."

Burr said the American people “look at us and say, this makes common sense. What took so damn long? Well, you know, I'm embarrassed that it took so long, but this is a product that Congress, the Senate, can be proud of.

"One of the clues that something was wrong was the fact that we penalized individuals who had disabilities from holding assets," Burr added. "It meant they couldn't buy a car and have it be in their name. It meant that they could only earn so much before they were penalized. What we've done is we've changed the landscape."

According to an analysis by the Congressional Budget Office, eligible expenses could include:

  • education
  • housing
  • transportation
  • employment training and support
  • assistive technology and personal support services
  • health, prevention, and wellness
  • financial management and administrative services
  • legal fees
  • expenses for oversight and monitoring
  • funeral and burial expenses
  • other expenses to be determined by IRS

To learn how ABLE accounts would work, go HERE.

Earlier this week. a driving force behind the creation of ABLE accounts, Steve Beck, the father of a daughter with Down syndrome and a board member of the National Down Syndrome Society, died suddenly. In his honor, Rep. Ander Crenshaw (R-FL), the originalHouse sponsor of the bill had the measure renamed in Beck's honor.

“Steve represents the soul of the ABLE Act and played a central role in getting if off the ground more than eight years ago,” said Crenshaw. “More importantly, on behalf of his own daughter Natalie and millions of others with disabilities, Steve never gave up hope that ABLE would move across the Congressional finish line and become law of the land.History was made in large part because of his steadfast dedication to improve the quality of life for so many – an important lesson we would all do well to keep close a heart.”

Several states are now moving to create ABLE accounts providing state tax income benefits, consistent with the development over the years of college savings accounts at both the federal and state levels. Massachusetts created a state ABLE program earlier this year.


National Resource Center for Supported Decision-Making (NRC-SDM) - AUCD
The National Resource Center for Supported Decision-Making (NRC-SDM) builds on and extends the work of Quality Trust's Jenny Hatch Justice Project by bringing together vast and varied partners to ensure that input is obtained from all relevant stakeholder groups including older adults, people with intellectual and developmental disabilities (I/DD), family members, advocates, professionals and providers. The NRC-SDM partners bring nationally recognized expertise and leadership on SDM, representing the interests of and receiving input from thousands of older adults and people with I/DD.
December 18, 2014

Mounting Evidence Points To Air Pollution, Autism Link - DisabiltyScoop
Exposure to high levels of air pollution during pregnancy -- particularly during later stages -- may double a woman's risk of having a child with autism, a new Harvard study suggests.

Free Videos and Vignettes Available Online for Recognition & Response: RTI for Pre-K - AUCD
Watch this video and observe how the teachers use handheld devices to gather assessment information on children's language and literacy skills. The Recognition & Response project is a program of the FPG Child Development Institute of the University of North Carolina at Chapel Hill.
December 17, 2014

Tax-Free Disability Savings Bill Headed To Obama - DisabiltyScoop
The U.S. Senate has voted overwhelmingly to send legislation to the president establishing a new way for people with disabilities to save money without risking their government benefits.
December 16, 2014

10 Ways to Support Families of Children with Autism this Holiday Season - PRNewswire

BOSTON, Dec. 16, 2014 /PRNewswire-USNewswire/ -- For many of us, the holiday season is a wonderful time of the year – a time to get together with friends and family, enjoy favorite foods, decorate our homes, and exchange gifts. But it can also be a stressful season when you...



Disability Champion Leaving Congress - DisabiltyScoop
After 40 years on Capitol Hill, a U.S. senator who shaped the Americans with Disabilities Act is leaving his post.

New Prenatal Tests Called Into Question - DisabiltyScoop
Companies hawking new prenatal tests to detect Down syndrome and other chromosomal abnormalities may be promising more than they can deliver, an investigation finds.

Down Syndrome No Barrier To College Degree - DisabiltyScoop
Stereotypes and academic hurdles haven't stopped one man with Down syndrome from receiving his bachelor's degree, graduating magna cum laude.

Reps. Frankel, Deutch Cheer On ABLE At Autism Speaks' Florida Office - Autism Speaks - Advocasy

Meet with parents of children with autism

December 16, 2014

WEST PALM BEACH, FL -- Meeting with parents of children with autism at the Autism Speaks office here, U.S. Representatives Lois Frankel (FL-22) and Ted Deutch(FL-21) spoke of the benefits that could come with final Congressional approval of theAchieving a Better Life Experience Act (ABLE) Act. Their Florida colleague, Rep. Ander Crenshaw (FL-4), is the original sponsor of the bill which passed the House 404-17 last week.

Awaiting final approval in the Senate after eight years before Congress,the bipartisan bill has been called themost significant disabilities legislation since the1990 Americans with Disabilities Act.

"Families caring for a child with a disability worry about their child's long term security,” saidFrankel. “The ABLE Act allows parents to provide a cushion of support for their beloved son or daughter as they enter into adulthood."

Deutch said, “Parents of children with autism, Down syndrome, and other types of disabilities face unique financial challenges when it comes to planning for their long-term care expenses,” saidDeutch. "The ABLE Act is a commonsense solution that will help improve the financial security of millions of families by allowing them to save money in tax-free accounts and better plan for their disabled children's needs.”

Frankel and Deutch cosponsored the ABLE Act which would allow individuals with disabilities, or their families to save tax-free for their longterm disability expenses.


NC Mom Lectures Politically Opposed Sons: Agree On Autism - Autism Speaks - Advocasy

One a Democrat, the other a Republican get surprise call on TV

December 16, 2014

Political pundits Dallas and Brad Woodhouse who argue from opposite sides of the political spectrum were told yesterday to meet in the middle when it comes to autism. The order came from their mother Joy in a viewerphone call as the two weretalking politicson C-SPAN's Washington Journal.

"Oh god, it's mom," said Dallas Woodhouse, the Republican, as their motherrelated their bickering over Thanksgiving and pleaded fora "peaceful Christmas."

Asked by the moderator where she landed on the political spectrum, Joy Woodhouse said said she was a "one-issue person" driven by concern for her grandson with autism.

Watch the clip here:


NC Mom Lectures Politically Opposed Sons: Agree On Autism - Autism Speaks - Advocasy

One a Democrat, the other a Republican get surprise call on TV

December 16, 2014

Political pundits Dallas and Brad Woodhouse who argue from opposite sides of the political spectrum were told yesterday to meet in the middle when it comes to autism. The order came from their mother Joy in a viewerphone call as the two weretalking politicson C-SPAN's Washington Journal.

"Oh god, it's mom," said Dallas Woodhouse, the Republican, as their motherrelated their bickering over Thanksgiving and pleaded fora "peaceful Christmas."

Asked by the moderator where she landed on the political spectrum, Joy Woodhouse said said she was a "one-issue person" driven by concern for her grandson with autism.

Watch the clip here:


'60 Minutes' Spotlights Insurance Denials For Mental Health - Autism Speaks - Advocasy

California fights back through legal action, regulation

December 16, 2014

California Insurance Commissioner Dave Jones has commended CBS "60 Minutes" for highlighting the difficulties individualsexperience in securing longterm mental health coverage and highlighted his agency's efforts to improve benfits, particularly for the treatment of autism.

The CBS segment, entitled "Denied," [view below] aired December 14 and focused onclaims processed byAnthem. CBS found that 90 to 100 percent of claims reviews were denied by Anthem's contracted physicians.

"60 Minutes highlights Anthem Blue Cross' history of denying coverage for vital mental health treatment despite mental health parity laws, but they are not the only insurer that has denied coverage for lifesaving care to those who suffer from mental illness," said Jones. "If a patient is denied medically necessary care, such as residential care for an eating disorder or behavioral health treatment for autism, the Department of Insurance is here to help the policyholder get the coverage they are entitled to under the law. This 60 Minutes feature puts a national spotlight on the all too common practice of denying people with severe mental illness the medical care to which they are entitled."

In April, Jones' agency issued strict guidelines on the behavioral health treatment for autism, such as applied behavioral analysis (ABA),that insurers must cover.Prior to the new regulations, it was not uncommon for health insurers to delay or deny medically necessary treatment for individuals with autism.

"The mental health parity regulations will help end improper insurer delays and denials of medically necessary treatments for people with autism," saidJones. "This regulation provides clear guidance to the industry, stakeholders and consumers on the requirements of the Mental Health Parity Act."

Autism Speaks honoredJones as its2014 Executive Champion for his strong advocacy on behalf of families with autism during the 9th Annual Autism Law Summit.

As a result of a string of class action lawsuits brought in Washington state, coverage for autism has now been required by regulation by all state-regulated health plans. The litigation was all based on alleged violations of state and federal mental health parity law.


Intronix Technologies to Collaborate with Western University to Develop New Rehabilitation Technologies for Musculoskeletal Disorders - PRNewswire

TORONTO, Dec. 16, 2014 /PRNewswire/ -- Intronix Technologies will be collaborating with Western University's Department of Electrical and Computer Engineering to develop technology to be incorporated into rehabilitation devices. Canadian-based innovator Intronix Technologies will...


December 15, 2014

Home Health Leaders Commend Congress on Budget Deal - PRNewswire

WASHINGTON, Dec. 15, 2014 /PRNewswire-USNewswire/ -- The Partnership for Quality Home Healthcare – a leading coalition of home health providers dedicated to improving the integrity, quality, and efficiency of home healthcare for our nation's seniors – today commended...



Governments of Canada and Prince Edward Island take action to help Islanders get jobs faster - PRNewswire

SUMMERSIDE, PEI, Dec. 15, 2014 /CNW/ - Today, the Government of Canada announced nearly $4 million in funding to Prince Edward Island (PEI) for two projects that will help young people and newcomers find work in their fields. The governments also renewed two agreements that will...



Feds Inch Closer To Disability Hiring Goal - DisabiltyScoop
The federal government added people with disabilities to its payroll at a higher rate last year than at any other time in the last three decades.

Division of Human Development and Disability's New Director, Dr. Georgina Peacock - AUCD
Georgina Peacock, MD, MPH, FAAP has been appointed as the Director of the Division of Human Development and Disability. Dr. Peacock has served as the Acting Director for the past four months, but she assumed the role permanently on Monday, December 15, 2014.

Ohio Insurance Reform Delayed Into 2015 - Autism Speaks - Advocasy
December 08, 2014

An attempt to expand autism insurance coverage in Ohio in 2014to include state-regulated plans was quashed by a committee chairman who said he would refuse to consider the measure.

Rep. Lynn Wachtmann of Napoleon, who chairs the House Health and Aging Committee, said he would refuse to move the bill before he leaves the Legislature at the end ofthis month.

Children of state employees and those covered under the Affordable Care Act gained coverage this year by virtue of an executive order issued by Gov. John Kasich, but those with private health plans regulated by the state continue to be denied coverage for applied behavior analysis (ABA) and other treatments.

The autism insurance reform campaign will resume in 2015 to make Ohio the 39th state to require coverage of medcially necessary treatment.

December 12, 2014

Michigan To End Medicaid Waiver Services That 'Isolate' Individuals - Autism Speaks - Advocasy

Public reaction sought through December 24

December 12, 2014

Michiganhas proposed changing its Medicaid waiver program for Home- and Community-Based Services (HCBS) in order to comply with a federal directive that prohibits services that "isolate" participants from the general community, and is inviting public reaction. The new rules will affect group homes, adult residential facilities, congregate living health facilities, and other settings.

TheMichigan Department of Community Health said it "will be developing a transition plan to bring its waiver programs into compliance with the new regulations while continuing to provide vital services and supports to Michigan citizens. The Department is committed to an inclusive process partnering with people receiving services, their allies, health care providers, and other organizations to create a transition plan that serves the best interests of the people of Michigan while also meeting requirements from the Centers for Medicare and Medicaid Services."

Individuals with autism and their caregivers who receive or want Medicaid waiver funding can comment on the new proposal through December 24. Further information is available at the Michigan Department of Community Health HERE.

To submit written comments, send them by email to: HCBSTransition@michigan.gov or by mail to:

Attention: HCBS Program Transition
Medicaid Policy
Michigan Department of Community Health
P.O. Box 30479
Lansing, Michigan 48909-7979

All comments should include a "HCBS Transition Plan Comment" reference somewhere in the written submission or in the subject line if an e-mail is used.

What's the issue?

Early this year, the federal government issued new guidelines that may affect how you as an individual with autism or a caregiver will receive services through Medicaid.Michigan has proposed revising its Medicaid program to comply with the new regulations, which can affect services such as in-home or out-of-home residential support, day activities like supported employment or day habilitation, and other services like respite and family support. For more information about these rules, check out this replay from Autism Speaks' live chat.

What can you do about it?

Michiganis now required to seek public input. This is your opportunity as an individual with autism or a caregiver to affect how these changes take place in your state.

The new rules were published in early 2014 by the Centers for Medicare & Medicaid Services (CMS), the federal agency responsible for administering the Medicaid program. The regulations outlined criteria for certain Home and Community-based Services (HCBS) programs operated under specific Medicaid waiver programs.

Medicaid HCBS programs provide a variety of services and supports that individuals with autism need to live in the community. These programs offer an alternative to institutional services for people with disabilities who need ongoing support to meet their functional needs. All states operate HCBS programs that serve individuals with developmental disabilities, like autism, but these programs vary widely from state to state in terms of eligibility requirements and available services. More information about Medicaid HCBS is available online.

What do the new rules mean?

The rules require all Medicaid HCBS programs to allow individuals to be able to choose their services and have access to the community. In particular, states are prohibited from using HCBS funding for settings that isolate individuals from the broader community. This is an important new protection that could help individuals with autism live in settings that are more integrated with the community.

However, in implementing this new requirement, each state Medicaid office has significant discretion in determining whether a given setting results in “isolation.” As a result of the rules, states are beginning to 1) identify the type of settings that may no longer be in compliance with the new rules, and 2) develop plans on how they will change their HCBS programs.

CMS developed these rules over a number of years, and Autism Speaks has long been involved in helping ensure that the needs of the autism community were represented in the development of these new standards. Now that the rules are final, states are beginning to implement the necessary changes to their programs including identifying the type of settings that may no longer be in compliance with the new rule, and to develop plans that outline any changes they will make to their HCBS programs as a result.

What is Autism Speaks doing and what can autism families do?

During this process, states are required to obtain input from advocates and Autism Speaks urges each state to seek and incorporate stakeholders' views on what constitutes isolating settings and how best to integrate individuals into the broader community. For more information on Autism Speaks' position on Housing and Residential supports, view our position statement here. Individuals with autism and their family know firsthand the barriers to true community integration and are the most appropriate individuals to help define isolating settings.

Not sure what to say?

Medicaid policy can be very confusing and the state documents that describe programs aren't written in a way that most people can understand. But that shouldn't stop advocates from expressing their opinion. CMS has published a set of exploratory questions that advocates can use to help them think about their experiences and create their message to state officials.

If you are in a waiver program already, use these questions to tell about your experience. For example:

  • What was your experience planning your waiver services? Were you able to choose the services you wanted and get them where and how often you wanted?
  • Does the place where you get your services reflect your needs and preferences? Did you have options to choose from?

If you are not yet receiving waiver services (because you are on a waitlist or otherwise) but expect to be using waiver services in the future, use these questions to talk about what services will be important to you in the future. For example:

  • Do you want to be able to work? If not, what type of meaningful non-work activities would you like to be involved in?
  • Would you like to have roommates or live on your own? How often would you like to have visitors? What types of supports are necessary for you to live as independently as possible?

CT To End Medicaid Waiver Services That 'Isolate' Individuals - Autism Speaks - Advocasy

Public comment ends December 15

December 12, 2014

Connecticuthas proposed changing its Medicaid waiver program for Home- and Community-Based Services (HCBS) in order to comply with a federal directive that prohibits services that "isolate" participants from the general community, and is inviting public reaction. The new rules will affect group homes, adult residential facilities, congregate living health facilities, and other settings.

The plan was developed by the Connecticut Department of Disability Services which reports that the only public comments it has received to date are from "two area agencies on aging, a care management organization, and an advocacy organization." No comments were reported from people with autism or their caregivers.

Individuals with autism and their caregivers who receive or want Medicaid waiver funding can comment on the new proposal through December 15. Further information is available at the Connecticut Department of Developmental Services (DDS)HERE.

To submit comments, email DDS.HCBSTransition@ct.gov; call:(860) 418-8723; or fax your written comments to:(860) 622-2675.

What's the issue?

Early this year, the federal government issued new guidelines that may affect how you as an individual with autism or a caregiver will receive services through Medicaid.Connecticut DDS has proposed revising its Medicaid program to comply with the new regulations, which can affect services such as in-home or out-of-home residential support, day activities like supported employment or day habilitation, and other services like respite and family support. For more information about these rules, check out this replay from Autism Speaks' live chat.

What can you do about it?

Connecticutis now required to seek public input. This is your opportunity as an individual with autism or a caregiver to affect how these changes take place in your state.

The new rules were published in early 2014 by the Centers for Medicare & Medicaid Services (CMS), the federal agency responsible for administering the Medicaid program. The regulations outlined criteria for certain Home and Community-based Services (HCBS) programs operated under specific Medicaid waiver programs.

Medicaid HCBS programs provide a variety of services and supports that individuals with autism need to live in the community. These programs offer an alternative to institutional services for people with disabilities who need ongoing support to meet their functional needs. All states operate HCBS programs that serve individuals with developmental disabilities, like autism, but these programs vary widely from state to state in terms of eligibility requirements and available services. More information about Medicaid HCBS is available online.

What do the new rules mean?

The rules require all Medicaid HCBS programs to allow individuals to be able to choose their services and have access to the community. In particular, states are prohibited from using HCBS funding for settings that isolate individuals from the broader community. This is an important new protection that could help individuals with autism live in settings that are more integrated with the community.

However, in implementing this new requirement, each state Medicaid office has significant discretion in determining whether a given setting results in “isolation.” As a result of the rules, states are beginning to 1) identify the type of settings that may no longer be in compliance with the new rules, and 2) develop plans on how they will change their HCBS programs.

CMS developed these rules over a number of years, and Autism Speaks has long been involved in helping ensure that the needs of the autism community were represented in the development of these new standards. Now that the rules are final, states are beginning to implement the necessary changes to their programs including identifying the type of settings that may no longer be in compliance with the new rule, and to develop plans that outline any changes they will make to their HCBS programs as a result.

What is Autism Speaks doing and what can autism families do?

During this process, states are required to obtain input from advocates and Autism Speaks urges each state to seek and incorporate stakeholders' views on what constitutes isolating settings and how best to integrate individuals into the broader community. For more information on Autism Speaks' position on Housing and Residential supports, view our position statement here. Individuals with autism and their family know firsthand the barriers to true community integration and are the most appropriate individuals to help define isolating settings.

Not sure what to say?

Medicaid policy can be very confusing and the state documents that describe programs aren't written in a way that most people can understand. But that shouldn't stop advocates from expressing their opinion. CMS has published a set of exploratory questions that advocates can use to help them think about their experiences and create their message to state officials.

If you are in a waiver program already, use these questions to tell about your experience. For example:

  • What was your experience planning your waiver services? Were you able to choose the services you wanted and get them where and how often you wanted?
  • Does the place where you get your services reflect your needs and preferences? Did you have options to choose from?

If you are not yet receiving waiver services (because you are on a waitlist or otherwise) but expect to be using waiver services in the future, use these questions to talk about what services will be important to you in the future. For example:

  • Do you want to be able to work? If not, what type of meaningful non-work activities would you like to be involved in?
  • Would you like to have roommates or live on your own? How often would you like to have visitors? What types of supports are necessary for you to live as independently as possible?

Bell Law Group to Award $1,000 Wheelchair Disability Scholarship - PRNewswire

NEW YORK, Dec. 12, 2014 /PRNewswire/ -- Making law school a little more accessible and affordable for one student, the Bell Law Group is launching a new $1,000 Wheelchair Disability Scholarship. With a wealth of experience supporting disability discrimination claims, the Bell Law Group is...



Special Ed, Disability Programs Unscathed In Budget Deal - DisabiltyScoop
A spending plan making its way through Congress is a win for people with disabilities, advocates say, more for what it doesn't do than what it does.

Effectiveness Of Cerebral Palsy Treatment Weighed - DisabiltyScoop
A surgery that improves mobility for some kids with cerebral palsy leaves others even more likely to lose balance. Now researchers are working to understand who's most likely to benefit.

Save the Date - 2015 UCEDD Directors Retreat and TA Institute - AUCD
These meetings provide an opportunity for UCEDD leaders to network, meet with their federal project officers, and learn of new initiatives, national trends, and other information vital to the administration of the UCEDD programs.

2015 UCEDD Leadership Institute - Save the Dates! - AUCD
After another successful year, the UCEDD Leadership Institute will be back in 2015! Please consider recommending your staff for the 2015 class of future UCEDD leaders representing the full diversity of the country.

WVa To End Medicaid Waiver Services That 'Isolate' Individuals - Autism Speaks - Advocasy

Public reaction sought through December 26

December 12, 2014

West Virginiahas proposed changing its Medicaid waiver program for Home- and Community-Based Services (HCBS) in order to comply with a federal directive that prohibits services that "isolate" participants from the general community, and is inviting public reaction. The new rules will affect group homes, adult residential facilities, congregate living health facilities, and other settings.

According to the state Department of Health and Human Resources, "The Centers for Medicare & Medicaid Services (CMS) recently released new regulations and guidance on the delivery of home and community-based services (HCBS) offered through Medicaid waiver programs. Through this new rule, CMS intends to ensure that individuals receiving HCBS through Medicaid waivers have full access to integrated, community living including receiving services in the most integrated setting possible."

Individuals with autism and their caregivers who receive or want Medicaid waiver funding can comment on the new proposal through December 26. Further information is available at the West Virginia Department of Health and Human Resources HERE.

To submit written comments, send them by email to WVWaiverTransitions@wv.gov, or

Mail comments to:
Bureau for Medical Services
ATTN: WV HCBS Waiver Transition Plan
350 Capitol Street, Room 251
Charleston, WV 25301

What's the issue?

Early this year, the federal government issued new guidelines that may affect how you as an individual with autism or a caregiver will receive services through Medicaid.West Virginiahas proposed revising its Medicaid program to comply with the new regulations, which can affect services such as in-home or out-of-home residential support, day activities like supported employment or day habilitation, and other services like respite and family support. For more information about these rules, check out this replay from Autism Speaks' live chat.

What can you do about it?

West Virginiais now required to seek public input. This is your opportunity as an individual with autism or a caregiver to affect how these changes take place in your state.

The new rules were published in early 2014 by the Centers for Medicare & Medicaid Services (CMS), the federal agency responsible for administering the Medicaid program. The regulations outlined criteria for certain Home and Community-based Services (HCBS) programs operated under specific Medicaid waiver programs.

Medicaid HCBS programs provide a variety of services and supports that individuals with autism need to live in the community. These programs offer an alternative to institutional services for people with disabilities who need ongoing support to meet their functional needs. All states operate HCBS programs that serve individuals with developmental disabilities, like autism, but these programs vary widely from state to state in terms of eligibility requirements and available services. More information about Medicaid HCBS is available online.

What do the new rules mean?

The rules require all Medicaid HCBS programs to allow individuals to be able to choose their services and have access to the community. In particular, states are prohibited from using HCBS funding for settings that isolate individuals from the broader community. This is an important new protection that could help individuals with autism live in settings that are more integrated with the community.

However, in implementing this new requirement, each state Medicaid office has significant discretion in determining whether a given setting results in “isolation.” As a result of the rules, states are beginning to 1) identify the type of settings that may no longer be in compliance with the new rules, and 2) develop plans on how they will change their HCBS programs.

CMS developed these rules over a number of years, and Autism Speaks has long been involved in helping ensure that the needs of the autism community were represented in the development of these new standards. Now that the rules are final, states are beginning to implement the necessary changes to their programs including identifying the type of settings that may no longer be in compliance with the new rule, and to develop plans that outline any changes they will make to their HCBS programs as a result.

What is Autism Speaks doing and what can autism families do?

During this process, states are required to obtain input from advocates and Autism Speaks urges each state to seek and incorporate stakeholders' views on what constitutes isolating settings and how best to integrate individuals into the broader community. For more information on Autism Speaks' position on Housing and Residential supports, view our position statement here. Individuals with autism and their family know firsthand the barriers to true community integration and are the most appropriate individuals to help define isolating settings.

Not sure what to say?

Medicaid policy can be very confusing and the state documents that describe programs aren't written in a way that most people can understand. But that shouldn't stop advocates from expressing their opinion. CMS has published a set of exploratory questions that advocates can use to help them think about their experiences and create their message to state officials.

If you are in a waiver program already, use these questions to tell about your experience. For example:

  • What was your experience planning your waiver services? Were you able to choose the services you wanted and get them where and how often you wanted?
  • Does the place where you get your services reflect your needs and preferences? Did you have options to choose from?

If you are not yet receiving waiver services (because you are on a waitlist or otherwise) but expect to be using waiver services in the future, use these questions to talk about what services will be important to you in the future. For example:

  • Do you want to be able to work? If not, what type of meaningful non-work activities would you like to be involved in?
  • Would you like to have roommates or live on your own? How often would you like to have visitors? What types of supports are necessary for you to live as independently as possible?
December 11, 2014

Wisconsin To End Medicaid Waiver Services That 'Isolate' Individuals - Autism Speaks - Advocasy

Public reaction sought through December 26

December 10, 2014

Wisconsinhas proposed changing its Medicaid waiver program for Home- and Community-Based Services (HCBS) in order to comply with a federal directive that prohibits services that "isolate" participants from the general community, and is inviting public reaction. The new rules will affect group homes, adult residential facilities, congregate living health facilities, and other settings.

The goal of the new federal requirements, according to theWisconsin Department of Public Health, is to "ensure that Medicaid long-term care programs provide full access to the benefits of community living and offer services in the most integrated settings. The state must submit a statewide transition plan that identifies how it will come into compliance with the new outcome-oriented definition of HCBS settings by March 17, 2019."

Individuals with autism and their caregivers who receive or want Medicaid waiver funding can comment on the new proposal through December 29. Further information is available at the Wisconsin Department of Public Health HERE.

To submit written comments, send them by email to: DHSWebmailDLTC@wisconsin.gov; writeStatewide Transition Planin the subject line. Written comments also can be mailed to:

Division of Long Term Care
Attn: Statewide Transition Plan
1 West Wilson St, Room 518
PO Box 7851
Madison WI 53707-7851

What's the issue?

Early this year, the federal government issued new guidelines that may affect how you as an individual with autism or a caregiver will receive services through Medicaid.Wisconsin has proposed revising its Medicaid program to comply with the new regulations, which can affect services such as in-home or out-of-home residential support, day activities like supported employment or day habilitation, and other services like respite and family support. For more information about these rules, check out this replay from Autism Speaks' live chat.

What can you do about it?

Wisconsinis now required to seek public input. This is your opportunity as an individual with autism or a caregiver to affect how these changes take place in your state.

The new rules were published in early 2014 by the Centers for Medicare & Medicaid Services (CMS), the federal agency responsible for administering the Medicaid program. The regulations outlined criteria for certain Home and Community-based Services (HCBS) programs operated under specific Medicaid waiver programs.

Medicaid HCBS programs provide a variety of services and supports that individuals with autism need to live in the community. These programs offer an alternative to institutional services for people with disabilities who need ongoing support to meet their functional needs. All states operate HCBS programs that serve individuals with developmental disabilities, like autism, but these programs vary widely from state to state in terms of eligibility requirements and available services. More information about Medicaid HCBS is available online.

What do the new rules mean?

The rules require all Medicaid HCBS programs to allow individuals to be able to choose their services and have access to the community. In particular, states are prohibited from using HCBS funding for settings that isolate individuals from the broader community. This is an important new protection that could help individuals with autism live in settings that are more integrated with the community.

However, in implementing this new requirement, each state Medicaid office has significant discretion in determining whether a given setting results in “isolation.” As a result of the rules, states are beginning to 1) identify the type of settings that may no longer be in compliance with the new rules, and 2) develop plans on how they will change their HCBS programs.

CMS developed these rules over a number of years, and Autism Speaks has long been involved in helping ensure that the needs of the autism community were represented in the development of these new standards. Now that the rules are final, states are beginning to implement the necessary changes to their programs including identifying the type of settings that may no longer be in compliance with the new rule, and to develop plans that outline any changes they will make to their HCBS programs as a result.

What is Autism Speaks doing and what can autism families do?

During this process, states are required to obtain input from advocates and Autism Speaks urges each state to seek and incorporate stakeholders' views on what constitutes isolating settings and how best to integrate individuals into the broader community. For more information on Autism Speaks' position on Housing and Residential supports, view our position statement here. Individuals with autism and their family know firsthand the barriers to true community integration and are the most appropriate individuals to help define isolating settings.

Not sure what to say?

Medicaid policy can be very confusing and the state documents that describe programs aren't written in a way that most people can understand. But that shouldn't stop advocates from expressing their opinion. CMS has published a set of exploratory questions that advocates can use to help them think about their experiences and create their message to state officials.

If you are in a waiver program already, use these questions to tell about your experience. For example:

  • What was your experience planning your waiver services? Were you able to choose the services you wanted and get them where and how often you wanted?
  • Does the place where you get your services reflect your needs and preferences? Did you have options to choose from?

If you are not yet receiving waiver services (because you are on a waitlist or otherwise) but expect to be using waiver services in the future, use these questions to talk about what services will be important to you in the future. For example:

  • Do you want to be able to work? If not, what type of meaningful non-work activities would you like to be involved in?
  • Would you like to have roommates or live on your own? How often would you like to have visitors? What types of supports are necessary for you to live as independently as possible?

AUCD Welcomes New Staff - AUCD
AUCD is pleased to welcome several new and talented staff to our Central Office! We are excited about the expertise they bring and the contributions we are confident they'll make in working for the network and people with disabilities.

Accomplished Cross-Sector Leader Named UCP Chair - UPC
Effective October 1, United Cerebral Palsy’s Board of Trustees welcomed new members and several new officers to help lead the national nonprofit organization for people with disabilities and their families. UCP has more than 80 affiliates in the U.S. and internationally. Gloria …
Read More

Former Deputy Secretary of Labor, LinkedIn VP, Business Leader to Contribute to UCP's Mission - UPC
  United Cerebral Palsy (UCP) elected ten members to its Board of Trustees during its 2014 Annual Conference in Nashville, Tennessee including three members new to the organization. Seth Harris, former U.S. Deputy Secretary of Labor, Pablo Chavez, LinkedIn's Vice …
Read More

Father and Son Racing Duo Inspire Teams to Get Active, Support UCP - UPC
United Cerebral Palsy (UCP) is honored to announce that Team Hoyt, Rick Hoyt of Sturbridge, MA and Dick Hoyt of Holland, MA, will serve as the 2014 Steptember event Ambassadors. Steptember is a four-week event to raise awareness and support for …
Read More

UCP RELEASES ANNUAL REPORT ON STATES SERVING AMERICANS WITH DISABILITIES - UPC
FOR IMMEDIATE RELEASE CONTACT: Kaelan Richards: 202-973-7175, krichards@ucp.org UCP RELEASES ANNUAL REPORT ON STATES SERVING AMERICANS WITH DISABILITIES  8th annual Case for Inclusion report ranks, compares states on Medicaid outcomes Washington, D.C. (April 17, 2014) – United Cerebral Palsy (UCP) …
Read More

UCP ANNOUNCES 2014 AWARDS FOR EXCELLENCE - UPC
FOR IMMEDIATE RELEASE CONTACT: Kaelan Richards: 202-973-7175, krichards@ucp.org UCP ANNOUNCES 2014 AWARDS FOR EXCELLENCE Annual awards honor exceptional people, programs and partnerships across the UCP affiliate network Washington, D.C. (April 14, 2014) – United Cerebral Palsy (UCP) is honored to announce the …
Read More

WORLD CP DAY 2014 IDEAS ANNOUNCED - UPC
FOR IMMEDIATE RELEASE                                                                      CONTACT:   January 20, 2014                                                                Kaelan Richards: 202-973-7175                                                                                                                  krichards@ucp.org $50,000 prize pool for anyone who can bring the ideas to life! More than 400 ideas submitted through “Change My World in 1 Minute” contest to help people with disabilities around …
Read More

The Arc and UCP React to Offensive Language to People with Disabilities in The Wolf of Wall Street - UPC
For Immediate Release                                                  Contact (The Arc): Kristen McKiernan January 13, 2014           …
Read More

UCP HOLDS FIRST INTERNATIONAL DESIGN-ATHON - UPC
FOR IMMEDIATE RELEASE CONTACT: Kaelan Richards: 202-973-7175, krichards@ucp.org UCP HOLDS FIRST INTERNATIONAL DESIGN-ATHON More than 100 hackers, makers and inventors gather to design and create accessible design prototypes Washington, D.C. (November 9, 2013) – United Cerebral Palsy (UCP)'s Life Labs, a technology and grassroots-focused initiative dedicated to identifying, …
Read More

UCP ANNOUNCES WORLD CEREBRAL PALSY CHALLENGE SUCCESS - UPC
FOR IMMEDIATE RELEASE CONTACT: Kaelan Richards: 202-973-7175, krichards@ucp.org UCP ANNOUNCES WORLD CEREBRAL PALSY CHALLENGE SUCCESS  International fundraising and fitness event raises more than $180,000 in U.S., $1.6 million worldwide Washington, DC (November 8, 2013) – United Cerebral Palsy (UCP) has …
Read More

Dollars And Doctors For Medicaid Shrink As Enrollment Grows - Autism Speaks - Advocasy

New reports find massive fee cuts, nonexistent doctors

December 11, 2014

WASHINGTON, DC -- Just as access to Medicaid-funded treatmentfor autismis growing, two new reports show doctors facesteep fee cuts and that half the providers listed as "participating" in state Medicaid managed care programsin fact do notparticipate or have stopped accepting new patients.

One third of American children with autism are covered through Medicaid and that coverage is expected to expand due to recent federal directives. In addition, 9.1 million new patients have enrolled in Medicaid under theAffordable Care Act. Medicaid is funded jointly by the federal and state governments and largely managed at the state level.

"When providers aren't available, it doesn't matter whether a state says they cover a particular benefit, such as applied behavior analysis, through their Medicaid program," said Angelo Lello, Autism Speaks' director of housing and community living. "The end result is Medicaid beneficiaries won't get those benefits. Access to benefits is essentially denied when providers are not available."

According to a new reportissued by theU.S. Department of Health and Human Services' (HHS) inspector general, over half the doctors listed as participating physicians in Medicaid managed care plans run by the states were misidentifed, do not accept new patients or couldn't be found at their listed office address.

The HHS report was in response to arequest from Congress to examine the access to care throughMedicaid managed care plans offered by the states. Most states now provide some, if not all, of their Medicaid services through managed care plans which are run primarily by for-profit companies.

Surveying arandom sample of 1,800 primary care providers and specialists, HHS found:

  • 35% couldn't be found at the location listed in the Medicaid plan
  • 8% said they did not participate in Medicaid
  • 8% said they were not accepting new Medicaid patients

While themedian wait time for those physicians who do participate wastwo weeks,over a quarter had wait times exceding one month, and 10 percent had wait times longer thantwo months. While primary care providers were less likely to offer an appointment than specialists, the specialists tended to have longer wait times.

The second report, an analysis by the Urban Institute, forecasts that the average Medicaid payment to primary care providers will drop 42 percent in 2015 with theexpiration of a two-year federal supplement at the end of December. The Urban Institute found 15 states that will continue the supplement with their own funds, but at least 24 others would not with the others undecided at the time of the survey in October.

"The 23 states included in this analysis that do not plan to continue the fee increase cover 71.3 percent of all Medicaid enrollees; the states that intend to continue the increase cover only 15.6 percent of Medicaid enrollees," according to the report. "In seven of the states that do not plan to continue the fee increase with state funds, Medicaid primary care fees for eligible codes will fall by 50 percent or more (Rhode Island, California, New York, New Jersey, Florida, Pennsylvania, and Illinois)."


AUCD Announces 2014 Trainee Scholarship Recipients - AUCD
AUCD is proud to sponsor 20 trainees with scholarships to the AUCD 2014 Conference. The trainees selected come from 17 centers, and represent both LENDs and UCEDDs in over 10 disciplines.

AUCD2014 Has Gone Mobile! - AUCD
Check out the 2014 AUCD App Guide for a detailed overview of how to download the app and how to access everything in it. See you in 4 days! Schedule, Maps, Twitter and ore on your mobile device - completely free.

Defense Department Working to Hire More People with Disabilities - AUCD
The U.S. Department of Defense (DoD) is taking steps to become a model employer of people with disabilities. Its new director of disability programs, Randy Cooper, is leading a department-wide effort to hire more people with disabilities, including troops wounded in Iraq and Afghanistan.

NPR's Shankar Vedantam to Speak at AUCD2014 - AUCD
Shankar Vedantam is a science correspondent for NPR. The focus of his reporting is on human behavior and the social sciences, and how research in those fields can get listeners to think about the news in unusual and interesting ways. Before joining NPR in 2011, Vedantam spent 10 years as a reporter at The Washington Post. From 2007 to 2009, he was also a columnist, and wrote the Department of Human Behavior column for the Post. Vedantam writes an occasional column for Slate called "Hidden Brain."

Letter to CMS Providing Comments on Speech Generating Devices - AUCD
On December 5, 2014, AUCD provided Laurence Wilson, the Director of the Chronic Care Policy Group of the Centers for Medicare and Medicaid Services in the United States Department of Health and Human Services comment on Speech Generating Devices. AUCD's special interest group on assistive technology worked in coalition with other researchers, health professionals, service providers, and individuals with disabilities and their families to provide the following comments with respect to the National Coverage Decision (NCD).

Training Volunteers to Help Children in Malawi - AUCD
Dr. Amy Hewitt from the Institute on Community Integration UCEDD and LEND at the University of Minnesota recently completed a visit to Africa where she participated in a collaborative training project with Mikala Mukongolwa of the Baulini Project and Dr. Jason Paltzer, Director of the Kingdom Workers Lutheran Health Alliance. The team made stops in Lusaka, Zambia, and Blantyre, Malawi, working with volunteers and families.

Disability-Related Hate Crimes Down - DisabiltyScoop
The number of reported hate crimes targeting people with disabilities fell last year, the FBI says.

YouTube Sensation Mary Desmond Lends Her Voice to High Hopes Head Injury Program - PRNewswire

TUSTIN, Calif., Dec. 11, 2014 /PRNewswire/ -- Captivating teen music artist and YouTube sensation with over nine million video views, Mary Desmond is helping to raise money for the High Hopes Head Injury Program, a 501(c)(3) charitable organization dedicated to the rehabilitation and...



Employment Law Firm Outten & Golden Announces Promotion of Three Lawyers in New York City Office - PRNewswire

NEW YORK, Dec. 11, 2014 /PRNewswire/ -- Employment law firm Outten & Golden LLP announced today the promotion of Molly Brooks, Juno Turner, and Katherine Blostein to its partnership, effective January 1, 2015. The new partners are based in the firm's New York City office. Molly...



New York City Metropolitan Transportation Authority Adds Another 147 New MV-1's to its Access-A-Ride Fleet - PRNewswire

SOUTH BEND, Ind., Dec. 11, 2014 /PRNewswire/ -- Mobility Ventures is proud to announce that the Metropolitan Transportation Authority (MTA), the mass transit provider serving the New York City metro area and the largest in the nation, has expanded its fleet of MV-1 wheelchair...


December 10, 2014

Dunga, técnico da Seleção, estará no torneio Bota do Mundo promovido pela Lupo - PRNewswire

PORTO ALEGRE, Brasil, 10 de dezembro de 2014 /PRNewswire/ -- Dunga, técnico da Seleção brasileira e Paulo Sérgio Carpegiani, ex- jogador do Flamengo e técnico de futebol, são as mais novas confirmações entre os ídolos de futebol que...



Three Reasons Why Americans Don't Insure Their Income - PRNewswire

PORTLAND, Maine, Dec. 10, 2014 /PRNewswire-USNewswire/ -- Twenty-seven percent of working adults think they have a greater chance of being audited by the IRS than experiencing an illness or injury that prevents them from working for a period of time. The actual odds? One percent for an...



Designer Focuses On Interiors For Those With Autism - DisabiltyScoop
After her son was diagnosed with autism, one interior designer schooled herself on how to create calming spaces for those on the spectrum. Now she's sharing her expertise with others.

Half Of Medicaid Providers Unavailable, Report Finds - DisabiltyScoop
A significant number of doctors purportedly accepting Medicaid are not actually offering treatment to the program's beneficiaries, a new investigation finds.

Disney Noncommittal On Adding Characters With Disabilities - DisabiltyScoop
Disney isn't making any promises in response to a petition signed by more than 75,000 people calling for the company to include more characters with disabilities in its movies.

Maria Isabel Frangenberg is AUCD's Early Career Professionals' December Guest Blogger - AUCD
AUCD is happy to announce the Early Career Professionals' December guest blogger - Maria Isabel Frangenberg. She is a Diversity and Inclusion Fellow with the Association of University Centers on Developmental Disabilities (AUCD).

Three New Cultural and Linguistic Competency Resources on the URC - AUCD
The term 'culturally competent', as defined by the Developmental Disabilities Bill of Rights and Assistance Act of 2000 (DD Act), "means services, supports, or other assistance that is conducted or provided in a manner that is responsive to the beliefs, interpersonal styles, attitudes, language, and behaviors of individuals who are receiving the services, supports, or other assistance, and in a manner that has the greatest likelihood of ensuring their maximum participation in the program involved." This page highlights various projects, collaborations, and resources focused on Cultural & Linguistic Competency.
December 9, 2014

Citibank Announces Renewed Support of TeletonUSA to Help Children With Disabilities, Cancer and Autism in the U.S. - PRNewswire

NEW YORK, Dec. 9, 2014 /PRNewswire/ -- Citibank (NYSE: C) announced today it will again support TeletonUSA and its mission of providing aid to children with neuromusculoskeletal disabilities, cancer and autism in the United States. Citibank has supported the charity since its U.S....



United Spinal Association Launches Resource Center at Spinalcord.org - PRNewswire

NEW YORK, Dec. 9, 2014 /PRNewswire-USNewswire/ -- United Spinal Association, the single, largest membership organization dedicated to improving the lives of people with spinal cord injuries and diseases (SCI/D) nationwide, today announced the re-deployment of its expanded resource...



Special Olympics Team USA Named - PRNewswire

WASHINGTON, Dec. 9, 2014 /PRNewswire-USNewswire/ -- Special Olympics Team USA is proud to announce that it will send a 491 member delegation to represent the United States at the 2015 Special Olympics World Summer Games, being held July 25-August 2, 2015, in Los Angeles, California. The...



"Cyber Warfare Requires Warriors" - Disabled Veteran-Owned Cyber Security Firms To Hire Wounded Warriors, Vets For Leading Edge National Security Cyber Analytics - PRNewswire

HERNDON, Va., Dec. 9, 2014 /PRNewswire/ -- YaData Solutions (YDS), a Service Disabled Veteran Owned Business (SDVOB) providing leading edge Big Data Analytics to U.S. Public and Global 1000 has partnered with Release 2 Innovation (R2i), an SDVOB open source cyber security firm...



December Diversity Jobs Report Reveals Opportunities For Employers Seeking To Hire Women And Minorities - PRNewswire

CHICAGO, Dec. 9, 2014 /PRNewswire/ -- Professional Diversity Network, Inc. (Nasdaq:IPDN) releases its newest Diversity Jobs Report (DJR) and Diversity Jobs Index (DJI), which includes an analysis of the nation's employment situation for women, minorities, veterans, LGBT and disabled...



Feds: IDEA Still Applies When Students Incarcerated - DisabiltyScoop
Kids with disabilities have the right to a free appropriate public education complete with academics, therapies and other supports even if they're locked up, federal officials say.
December 8, 2014

Autism Speaks Mourns NDSS' Steve Beck - Autism Speaks - Advocasy

Early advocate for ABLE passes at Virginia home

December 08, 2014

WASHINGTON, DC -- Autism Speaks today mourned the passing of Steve Beck, Jr.,vice chair of the board ofthe National Down Syndrome Society (NDSS), and a driving force behind the ABLE Act which is just days away from a final vote in Congress.

“Steve was a tremendous person, a loving father and a great advocate for people with Down syndrome,” said NDSS Chairman Rob Taishoff. “His leadership was one of his greatest assets and he will be missed.”

It was eight years ago that Beck came up with a plan to help his daughter, Natalie, who happens to have Down syndrome, save for the future. That plan, which is now known as the Achieving a Better Life Experience (ABLE) Act, passed the House of Representatives last week 404-17 and a vote is expected this week in the Senate.

"I learned late this afternoon that my friend Steve Beck had died," said Stuart Spielman, Autism Speaks;' senior policy advisor and counsel. "Steve and I had worked on the ABLE Act for many years, and I had gotten to know him well.Steve always spoke about his hopes for his daughter Natalie, who has Down syndrome, hopes that were very much like the hopes that I have for my son Zak, who has autism, hopes that are shared by thousands of parents and people with disabilities across the country.

"It was Steve's dream that the ABLE Act would make life better for people with disabilities, and the ABLE Act is very much his legacy," he added. "I will miss Steve greatly."

The Beck family's experience was related in an Autism Speaks blog.

“Without Steve seeing firsthand the inequity in the system for people with Down syndrome, we may not be on the verge of passing this landmark bill and helping millions of Americans,” said Sara Hart Weir, NDSS Interim President. “To see the joy on his face last week when the bill passed through the House, is something I will cherish forever. Today, we lost a dear friend, dedicated colleague, and wonderful community leader."

Beck served on the NDSS Board of Directors for over five years and previouslychaired its National Government Affairs Committee. This May, Beck was selected as the Vice Chairman of the NDSS Board. In addition to his work at NDSS, Beck also served locally on the Board of Directors for the Down Syndrome Association of Northern Virginia (DSANV) for over eight years, the past six as Vice Chairman.

Brian Ray, DSANV President, "Steve's ability to work on the national level while also being extremely active in the local community exemplified his passion and commitment to the entire Down syndrome community. He will be missed immensely."

Beck is survived by his wife, Catherine, and his two daughters, Mariae Rose and Natalie. The thoughts and prayers of NDSS and DSANV are with the Beck family at this time.


New Tests Offer Clarity For Kids Lacking Diagnosis - DisabiltyScoop
For those with developmental issues but no firm diagnosis, mapping a child's complete genetic information can quickly offer answers and potential treatment options, researchers say.

The New Jersey Action Blueprint for Transition to Adult Health Care (NJ UCEDD) - AUCD
The Boggs Center is pleased to announce the publication and availability of The New Jersey Action Blueprint for Transition to Adult Health Care. The Action Blueprint is the culmination of the ideas and work of the stakeholder group, The New Jersey Developmental Disabilities Transition to Adult Health Care Forum. Convened by The Boggs Center on Developmental Disabilities (NJ UCEDD) with funding from The Special Hope Foundation, this stakeholder Forum addressed pressing issues in health care transition, and focused on shifting the predominant paradigm in health care transition from pediatrics being �ready' to send patients to preparing the adult health care system to �receive' emerging adult patients.
December 5, 2014

Sensory Rooms Gaining In Popularity - DisabiltyScoop
A growing number of sensory rooms are cropping up nationwide designed to help those with disabilities find calm and learn to control their behavior.

Hiring Uptick Fails To Spur Disability Employment - DisabiltyScoop
Despite overall job market gains, people with disabilities are struggling to keep up, new figures from the U.S. Department of Labor suggest.

Casey Rallies Senate Support For ABLE - Autism Speaks - Advocasy

Urges vote next week on bill creating tax-free savings

December 05, 2014

PHILADELPHIA -- U.S. Senator Bob Casey, the lead Senate sponsor of the ABLE Act, called for a vote next week in the Senate before Congress adjourns at a rally with Delaware Valley disability advocates.

“The ABLE Act has never been closer to getting to the President's desk and I'm increasingly hopeful we'll get it there during this session," said Casey. "From the beginning the power of these families who want to save for their loved ones' long term care has propelled the ABLE Act forward. It's now time for the Senate to take this legislation up and provide families who have a child with a disability the added security they need.”

Sponsored by Casey and Sen. Richard Burr (R-NC), the ABLE Act would allow tax-free savings accounts for people with disabilities to save for their long term housing, medical, transportation and other needs. They would be modeled after Section 529 college savings accounts.

The ABLE Act, or Achieving a Better Life Experience Act, was approved 404-17 by the House on Wednesday. The measure has73 cosponsors in the Senate and 380 House cosponsors.

Help ABLE Pass The Senate By Taking Action HERE

Herren Associates Awarded $4.5 Million Contract for U.S. Army Medical Command Process Optimization Services - PRNewswire

WASHINGTON, Dec. 5, 2014 /PRNewswire/ -- Herren Associates, Inc. ("Herren"), a leading engineering and management consulting firm, has been awarded a contract by the U.S. Army Medical Command (MEDCOM) to provide Integrated Disability Evaluation System optimization services. Under...



Accesibilidad de pruebas de dominio del idioma inglés para los estudiantes de inglés y los estudiantes de inglés con discapacidades - PRNewswire

PRINCETON, Nueva Jersey, 4 de diciembre de 2014 /PRNewswire-HISPANIC PR WIRE/ -- Mientras la población que aprende inglés sigue creciendo en número y en diversidad en los Estados Unidos, el reto y la importancia de evaluar a todos los estudiantes, incluidos los...


December 4, 2014

Accessibility of English-language Proficiency Tests for English Learners and English Learners with Disabilities - PRNewswire

PRINCETON, N.J., Dec. 4, 2014 /PRNewswire-USNewswire/ -- As the English-learner population continues to increase in number and diversity in the U.S., the challenge and importance of assessing all students, including students with disabilities, increases as well. A new white paper...



New Inclusive Higher Education Assessment Tool from Think College! - AUCD
The tool is based on the Think College Standards for Inclusive Higher Education. There are eight standard areas, illustrated by the graphic to the left, with a total of 88 benchmarks. The online survey gives program staff the opportunity to reflect on current level of implementation for each benchmark. At the completion of the survey, a comprehensive report that details current level of implementation in each standard area is provided, along with resources to assist in increasing implementation in each area.

House Approves Tax-Free Disability Savings Accounts - DisabiltyScoop
The U.S. House of Representatives has voted to approve a bill that would establish a new way for people with disabilities to save money without risking their government benefits.
December 3, 2014

Minister Bergen recognizes International Day of Persons with Disabilities - PRNewswire
OTTAWA, Dec. 3, 2014 /CNW/ - Today, the Honourable Candice Bergen, Minister of State for Social Development, marked the International Day of Persons with Disabilities by reaffirming the Government of Canada's commitment to ensuring that all Canadians have the chance to contribute...

Canadian Paralympic Committee Celebrates 2014 International Day Of Persons With Disabilities - PRNewswire

OTTAWA, Dec. 3, 2014 /CNW/ - Amid growing excitement for the upcoming Toronto 2015 Parapan American Games and the Year of Sport in Canada, the Canadian Paralympic Committee is celebrating today the International Day Of Persons With Disabilities, continuing to work with our partners...



CELA, the Centre for Equitable Library Access, Opens World of Reading for Print Disabled Canadians - PRNewswire
TORONTO, Dec. 3, 2014 /CNW/ - Today, in observance of the International Day of Disabled Persons, the Centre for Equitable Library Access (CELA), champions a national effort to enrich the reading experience of Canadians with print disabilities offering fully accessible literature...

Canada's award-winning Access 2 Program celebrates major milestone on International Day of Persons with Disabilities - PRNewswire

Easter Seals announces its first National Ambassador who will be the 60,000 person to receive the Access 2 Card TORONTO, Dec. 3, 2014 /CNW/ - On the International Day of Persons with Disabilities, Easter Seals Canada proudly announces the appointment of 14-year-old Brandon Liston as...



Researchers Identify Autism ‘Thought-Marker' - DisabiltyScoop
Autism diagnosis currently relies on clinical evaluation, but a new study suggests it may be possible to detect the disorder with near perfect accuracy using brain scans.

International Day of People with Disabilities, 3 December 2014 - AUCD
The observance of this year's International Day of People with Disabilities (IDPD) provides an opportunity to further raise awareness of disability as a cross-cutting development issue. The theme of this year's commemoration, "Sustainable Development: The promise of technology" is timely, as it marks the conclusion of the period of the Millennium Development Goals (MDGS) in 2015 and the launching of the new development framework of sustainable development goals (SDGs).

House Passes ABLE, Final Senate Vote Expected Shortly - Autism Speaks - Advocasy

Before Congress for 8 years, bill would allow tax-free savings for disability needs

December 03, 2014

(WASHINGTON, DC) -- The U.S. House of Representatives today approved the ABLE Act 404-17 allowing tax-free savings accounts for individuals with disabilities and sent the bill to the Senate for final Congressional action. The legislation has been before Congress in various forms for eight years and has been endorsed by dozens of national disability organizations, including Autism Speaks and the National Down Syndrome Society.

Sponsored by Reps. Ander Crenshaw (R-FL) [ictured left] and Chris Van Hollen (D-MD), the bill attracted 380 House co-sponsors; the Senate version, sponsored by Senators Bob Casey (D-PA) and Richard Burr (R-NC), drew 74 co-sponsors.

“Step-by-step with focus and determination, the ABLE act has moved across the House finish line," said Crenshaw. "I couldn't be prouder or more thankful for the support that this landmark legislation has earned, from Autism Speaks and so many other disability advocacy organizations. Plain and simple, this is about leveling the playing field for individuals with disabilities and opening the door to a brighter future for millions of Americans, and teamwork made the difference in getting it done.”

Help ABLE Pass The Senate By Taking Action HERE

"Autism Speaks thanks Representative Crenshaw for never giving up the fight for ABLE, which means so much to so many in the disabilities community," said Autism Speaks President Liz Feld. "Now, millions of families will have the opportunity to save money for the disability needs of their children throughout their lifetime.

"We commend the House for its vote and extend special thanks to Speaker John Boehner, Majority Leader Kevin McCarthy and Minority Leader Nancy Pelosi for ensuring this bill was a priority in the short time remaining in this Congress," she added. "This long journey would not have been completed without the dedicated support of Reps. Cathy McMorris Rogers (R-WA),Steve Scalise (R-LA), Dave Camp (R-MI), Sandy Levin (D-MI) and Pete Sessions (R-TX)."

ABLE, or the Achieving a Better Life Experience Act, would amend the tax code to allow tax-free savings accounts to help finance disability-related needs. They would be similar to Section 529 college savings accounts and would eliminate, for ABLE accounts, the current $2,000 cap on savings for individuals with disabilities.

Under current law, people with disabilities who save more than $2,000 risk the loss of their Social Security, Medicaid and other benefits. Funds deposited in ABLE accounts would have to be used exclusively for disability-related expenses.

"I think as we look at the ABLE Act today, I thinkwe'llhave achance to see what can happen when people work together," Crenshaw said during the House floor debate.

"Most of us know someonewith a severe disability, it might beDown Syndrome, it might be autism, but sometimes it's hardfor us to understand the difficultiesthat they have to go throughalong with their families," he added. "They facechallenges that we can hardlyeven imagine sometimes and the ABLE Acttries to remedy that situation, to bring justice, to bring peace of mind to millions ofAmerican familieswho have to live with disabilitiesevery day."

December 2, 2014

Mobility is Most Common Disability Among Older Americans, Census Bureau Reports - PRNewswire

WASHINGTON, Dec. 2, 2014 /PRNewswire-USNewswire/ -- Nearly 40 percent of people age 65 and older had at least one disability, according to a U.S. Census Bureau report that covered the period 2008 to 2012. Of those 15.7 million people, two-thirds of them say they had difficulty in walking...



People Living with Paralysis Share Their Experiences with Online Dating - PRNewswire

SHORT HILLS, N.J., Dec. 2, 2014 /PRNewswire-USNewswire/ -- Sure, for some, Valentine's Day is a time to enjoy current relationships. But for many others, it's a time to reflect on future aspirations in love. In 2014, this often means thinking about online dating: A recent report from...



Steve Kenny, Peer Mentor, Offers Opportunity to Help 'Shorten the Learning Curve' for the Newly Injured - PRNewswire

SHORT HILLS, N.J., Dec. 2, 2014 /PRNewswire-USNewswire/ -- On May 23, 1993, Steve Kenny dove into a pool. He hit his head on the pool's floor, injuring his spinal cord at the C5/6 location. The accident resulted in quadriplegia. A fiercely independent person, Steve immediately found...



Reeve Grant Makes Waves with Adaptive Swimming Program in Miami Springs - PRNewswire

SHORT HILLS, N.J., Dec. 2, 2014 /PRNewswire-USNewswire/ -- Just over a month ago, in the small suburban community of Miami Springs, Florida, a nine-year-old boy living with disabilities was playing near the bank of a canal. It was a steep bank, and as he played, the young boy lost...



Goodwill® Urges People To Donate On Giving Tuesday - PRNewswire

ROCKVILLE, Md., Dec. 2, 2014 /PRNewswire-USNewswire/ -- Each day, thousands of people come to Goodwill® looking for help finding a job. Goodwill's job training and career services would not be possible without generous donations of used items from donors every day. This holiday...



Lawmakers Poised To Vote On ABLE Act - DisabiltyScoop
Congress is set to act this week on legislation that would allow people with disabilities to save money without jeopardizing their government benefits.

Cancer Drug May Play Role In Treating Fragile X - DisabiltyScoop
A potential cancer treatment may also relieve behavioral symptoms of a condition associated with autism and intellectual disability, researchers say.

AUCD Welcomes New Diversity and Inclusion Fellows - AUCD
AUCD welcomes four new Diversity Fellows! Hailing from Hawaii, New York, Virginia, and Wyoming, these individuals are coordinating the development of a diversity blueprint for AUCD's national network. This one-year initiative is funded by AIDD to enhance diversity and cultural competence of faculty, staff and students; cultivate partnerships; respond to increasingly diverse communities across the country; and develop strategies for continuing efforts.

Boehner: House Vote On ABLE Coming This Week - Autism Speaks - Advocasy

Cites Bob Wright call for action

December 02, 2014

WASHINGTON, DC -- House Speaker John Boehner (R-OH) today said the U.S. House of Representatives will vote this week on the ABLE Act, "a great bipartisan bill that will help many families." A vote could come as early as tomorrow on the bill, HR.647, which would allow tax-free savings accounts for people with disabilities.

Boehner made the announcement through a post on his website. He cited the broad support for the bill in Congress as well as from the disabilities community, including Bob Wright, co-founder of Autism Speaks.

“Families are looking for ways to finance things like an apartment, or a ride to work, or additional educational opportunities after high school that don't jeopardize other necessary services provided by federal programs," said Wright. "This bill creates a tool for families that could lead to a more independent and fulfilling life.”

You can help pass ABLE by urging your Members of Congress to vote YES this month. Take action HERE.

ABLE, or the Achieving a Better Life Experience Act, would amend the tax code to allow tax-free savings accounts to help finance disability-related needs. They would be similar to Section 529 college savings accounts and would eliminate, for ABLE accounts,the current $2,000 cap on savings for individuals with disabilities.

Under current law, people woith disabilities who save more more than $2,00 risk the loss of their Social Security, Medicaid and other benefits.

Sponsored by Rep. Ander Crenshaw (R-FL), the bill hasattracted 381 of the 435 Members of the House as co-sponsors; the Senate version, S.313, sponsored by Sen. Bob Casey (D-PA), has 74 cosponsors.


Supreme Court To Weigh Police Obligations Under ADA - DisabiltyScoop
The U.S. Supreme Court has agreed to hear a case that could set standards for police treatment of people with disabilities.
December 1, 2014

Minister Bergen launches new call for proposals to help Canadians with disabilities obtain jobs - PRNewswire
Organizations invited to apply for funding under reformed Opportunities Fund OTTAWA, Dec. 1, 2014 /CNW/ - Today, the Honourable Candice Bergen, Minister of State for Social Development, addressed the Fifth Annual Forum on Inclusion in Ottawa, just days ahead of International Day...

Tech Visionaries Form K4Connect: "Transforming the Internet of Things into the Internet of You" - PRNewswire

RALEIGH, N.C., Dec. 1, 2014 /PRNewswire/ -- A pair of veteran technology experts have joined forces to focus on making peoples' lives better by seamlessly connecting the rapidly expanding number of electronic devices and services that make up the "internet of things."  The...



With Eye On Disabilities, TV Gaining New Features - DisabiltyScoop
A first-of-its-kind offering designed to make it easier for people with disabilities to access television is making its debut.

Two New UCEDD "Promising Practice Briefs" Focus on Diversity - AUCD
Promising Practice Briefs highlight projects of excellence and offer a model from which UCEDDs can glean inspiration for new activities to augment their work. A promising UCEDD practice may be a research or evaluation project, policy analysis, data assessment, outreach initiative, or awareness effort. It may provide a direct service or a supported opportunity to people with a developmental disability, indirect support to family and community caregivers, or interdisciplinary training for students, fellows, professionals, and policymakers. It may involve leadership development, community work, or clinical practice.

Adult Medicaid Coverage Advances In Maine - Autism Speaks - Advocasy

Court settlement requires MaineCare to serve 1,000 adults on waiting lists

December 01, 2014

Autism Speaks is urging Maine adults with autism or their caregivers to sign up for the state's Medicaid waiver list before June 30, 2015 for an opportunity to receive housing, joband day habilitation services.

As a result of a court settlement reported in the Portland Press-Herald, MaineCare, the state's Medicaid agency, has agreed to expand the services to another 1,000 adults withdisabilities either onthe Medicaid waiver list or who are added by next June 30.Individuals can apply once they turn age 18 for services that begin after age 20.

The agreement is part of a class action settlement reached last week inKennebec County Superior Court and applies totwo adult Mediciad waiver programs. One is the Section 21 housing benefit designed to help people withdisabilities live at homeby providing speech therapy, transportation, work support and othert services. The othwer is theSection 29 day habilitation waiver which providesjob training, counseling, physical therapy and other services.

November 28, 2014

Government of Canada supports jobs and opportunities for youth and Canadians with disabilities in Newfoundland and Labrador - PRNewswire
ST. JOHN'S, Nov. 28, 2014  /CNW/ - The Government of Canada is helping 70 youth and Canadians with disabilities develop the skills and experience they need to find jobs. The announcement was made today by Senator Fabian Manning on behalf of the Honourable Candice Bergen,...
November 26, 2014

AUCD2014 Transcripts Available - AUCD
Transcripts from AUCD's three 2014 Conference plenary sessions are now available! Read and remember the information provided and insightful thoughts shared by speakers such as Shankar Vedantam, Emily Ladau, Judy Woodruff, Melody Musgrove, Kathy Greenlee, Portia Wu, Senator Tom Harkin, and more! (Videos yet to come.)
November 25, 2014

States Ranked On Court Accessibility - DisabiltyScoop
A new ranking finds that access to the courts for people with disabilities varies significantly from one state to the next.

Teens Get Community Service In Ice Bucket Case - DisabiltyScoop
Three teens who dumped urine, tobacco and spit on a 15-year-old with autism who thought he was participating in the "ice bucket challenge" have been ordered to do community service.

Disney Facing More ADA Suits - DisabiltyScoop
A battle over disability access at Disney theme parks has been renewed, with more than two dozen separate claims filed against the entertainment company.

10 new "SWIFT in 60" Mini-films Showing Inclusive Educational Practices (IOD NH UCEDD) - AUCD
IOD Filmmaker Dan Habib just completed 10 mini-films for the SWIFT Center that show what inclusive school transformation looks like in five trailblazing schools across the country.

Position Opening: Assistant Virtual Trainee - AUCD
AUCD is recruiting for a new position: Assistant Virtual Trainee. With AUCD member programs in every US state and territory as well as internationally, our trainees exist all across the world, and more support is needed! The Assistant Virtual Trainee will assist the current Virtual Trainee to continue to build a virtual network among these trainees at AUCD member programs. The Assistant Virtual Trainee will also be mentored by the Virtual Trainee to help them learn more about the AUCD Network, national issues, and trainee network. Deadline: December 19
November 24, 2014

AUCD 2014 Awards Presented to Outstanding Individuals - AUCD
18 awards were presented to network members and friends at the 2014 AUCD Conference. AUCD is incredibly proud to recognize those who have made exceptional contributions to the lives of people with disabilities and their families.

USAID Gives $2.2 Million to UCP Wheels for Humanity - UPC
UCP Wheels for Humanity (UCP Wheels), a subsidiary of United Cerebral Palsy of Los Angeles, Ventura & Santa Barbara Counties, has received a $2.2 million grant from the United States Agency for International Development (USAID) and JSI Research & Training Institute to support …
Read More

New Mexico To End Medicaid Waiver Services That 'Isolate' Individuals - Autism Speaks - Advocasy

Public reaction sought through December 15

November 24, 2014

New Mexicohas proposed changing its Medicaid waiver program for Home- and Community-Based Services (HCBS) in order to comply with a federal directive that prohibits services that "isolate" participants from the general community, and is inviting public reaction. The new rules will affect group homes, adult residential facilities, congregate living health facilities, and other settings.

The goal of the new requirements, according to the New Mexico Human Services Department (HSD) "is to serve an eligible recipient in his or her community as an alternative to him or her being institutionalized."

Individuals with autism and their caregivers who receive or want Medicaid waiver funding can comment on the new proposal through December 15. Further information is available at the HSD websiteHERE.

To comment on the proposal, send written comments to Cecilia Salazar, Human Services Department, Medical Assistance Division, Program Policy & Integrity Bureau, P.O. Box 2348, Santa Fe, New Mexico 87504. Emails may be directed to: Cecelia.Salazar@state.nm.us

Recorded messages may be left at (505) 827-7743 or toll free at (888) 997-2583, asking for extension 7-7743.

A public hearing on the proposal is scheduled to be held at the Toney Anaya Building, in the Rio Grande Room, in Santa Feon December 15 at11 a.m.

What's the issue?

Early this year, the federal government issued new guidelines that may affect how you as an individual with autism or a caregiver will receive services through Medicaid.New Mexicohas proposed revising its Medicaid program to comply with the new regulations, which can affect services such as in-home or out-of-home residential support, day activities like supported employment or day habilitation, and other services like respite and family support. For more information about these rules, check out this replay from Autism Speaks' live chat.

What can you do about it?

New Mexicois now required to seek public input. This is your opportunity as an individual with autism or a caregiver to affect how these changes take place in your state.

The new rules were published in early 2014 by the Centers for Medicare & Medicaid Services (CMS), the federal agency responsible for administering the Medicaid program. The regulations outlined criteria for certain Home and Community-based Services (HCBS) programs operated under specific Medicaid waiver programs.

Medicaid HCBS programs provide a variety of services and supports that individuals with autism need to live in the community. These programs offer an alternative to institutional services for people with disabilities who need ongoing support to meet their functional needs. All states operate HCBS programs that serve individuals with developmental disabilities, like autism, but these programs vary widely from state to state in terms of eligibility requirements and available services. More information about Medicaid HCBS is available online.

What do the new rules mean?

The rules require all Medicaid HCBS programs to allow individuals to be able to choose their services and have access to the community. In particular, states are prohibited from using HCBS funding for settings that isolate individuals from the broader community. This is an important new protection that could help individuals with autism live in settings that are more integrated with the community.

However, in implementing this new requirement, each state Medicaid office has significant discretion in determining whether a given setting results in “isolation.” As a result of the rules, states are beginning to 1) identify the type of settings that may no longer be in compliance with the new rules, and 2) develop plans on how they will change their HCBS programs.

CMS developed these rules over a number of years, and Autism Speaks has long been involved in helping ensure that the needs of the autism community were represented in the development of these new standards. Now that the rules are final, states are beginning to implement the necessary changes to their programs including identifying the type of settings that may no longer be in compliance with the new rule, and to develop plans that outline any changes they will make to their HCBS programs as a result.

What is Autism Speaks doing and what can autism families do?

During this process, states are required to obtain input from advocates and Autism Speaks urges each state to seek and incorporate stakeholders' views on what constitutes isolating settings and how best to integrate individuals into the broader community. For more information on Autism Speaks' position on Housing and Residential supports, view our position statement here. Individuals with autism and their family know firsthand the barriers to true community integration and are the most appropriate individuals to help define isolating settings.

Not sure what to say?

Medicaid policy can be very confusing and the state documents that describe programs aren't written in a way that most people can understand. But that shouldn't stop advocates from expressing their opinion. CMS has published a set of exploratory questions that advocates can use to help them think about their experiences and create their message to state officials.

If you are in a waiver program already, use these questions to tell about your experience. For example:

  • What was your experience planning your waiver services? Were you able to choose the services you wanted and get them where and how often you wanted?
  • Does the place where you get your services reflect your needs and preferences? Did you have options to choose from?

If you are not yet receiving waiver services (because you are on a waitlist or otherwise) but expect to be using waiver services in the future, use these questions to talk about what services will be important to you in the future. For example:

  • Do you want to be able to work? If not, what type of meaningful non-work activities would you like to be involved in?
  • Would you like to have roommates or live on your own? How often would you like to have visitors? What types of supports are necessary for you to live as independently as possible?

Kansas To End Medicaid Waiver Services That 'Isolate' Individuals - Autism Speaks - Advocasy

Public reaction sought through December 10

November 24, 2014

Kansas has proposed changing its Medicaid waiver program for Home- and Community-Based Services (HCBS) in order to comply with a federal directive that prohibits services that "isolate" participants from the general community, and is inviting public reaction. The new rules will affect group homes, adult residential facilities, congregate living health facilities, and other settings.

The Kansas Department of Aging and Disability Services (KDADS) has proposed a series of changes to comply with the new directive and has set a December 10 deadline for public comments.

Individuals with autism and their caregivers who receive or want Medicaid waiver funding can comment on the new proposal through December 10. Further information is available at the KDADS websiteHERE.

To submit comments:

  • By Phone: 785-296-4986 or 785-296-3473
  • By Email: HCBS-KS@kdads.ks.gov – Subject: HCBS Renewals Public Comments
  • By Mail: KDADS, Attn: HCBS Programs, 503 S. Kansas Ave, Topeka, KS 66603
  • By Fax: 785-296-0256, Attn: HCBS Programs

What's the issue?

Early this year, the federal government issued new guidelines that may affect how you as an individual with autism or a caregiver will receive services through Medicaid. Kansas has proposed revising its Medicaid program to comply with the new regulations, which can affect services such as in-home or out-of-home residential support, day activities like supported employment or day habilitation, and other services like respite and family support. For more information about these rules, check out this replay from Autism Speaks' live chat.

What can you do about it?

Kansas is now required to seek public input. This is your opportunity as an individual with autism or a caregiver to affect how these changes take place in your state.

The new rules were published in early 2014 by the Centers for Medicare & Medicaid Services (CMS), the federal agency responsible for administering the Medicaid program. The regulations outlined criteria for certain Home and Community-based Services (HCBS) programs operated under specific Medicaid waiver programs.

Medicaid HCBS programs provide a variety of services and supports that individuals with autism need to live in the community. These programs offer an alternative to institutional services for people with disabilities who need ongoing support to meet their functional needs. All states operate HCBS programs that serve individuals with developmental disabilities, like autism, but these programs vary widely from state to state in terms of eligibility requirements and available services. More information about Medicaid HCBS is available online.

What do the new rules mean?

The rules require all Medicaid HCBS programs to allow individuals to be able to choose their services and have access to the community. In particular, states are prohibited from using HCBS funding for settings that isolate individuals from the broader community. This is an important new protection that could help individuals with autism live in settings that are more integrated with the community.

However, in implementing this new requirement, each state Medicaid office has significant discretion in determining whether a given setting results in “isolation.” As a result of the rules, states are beginning to 1) identify the type of settings that may no longer be in compliance with the new rules, and 2) develop plans on how they will change their HCBS programs.

CMS developed these rules over a number of years, and Autism Speaks has long been involved in helping ensure that the needs of the autism community were represented in the development of these new standards. Now that the rules are final, states are beginning to implement the necessary changes to their programs including identifying the type of settings that may no longer be in compliance with the new rule, and to develop plans that outline any changes they will make to their HCBS programs as a result.

What is Autism Speaks doing and what can autism families do?

During this process, states are required to obtain input from advocates and Autism Speaks urges each state to seek and incorporate stakeholders' views on what constitutes isolating settings and how best to integrate individuals into the broader community. For more information on Autism Speaks' position on Housing and Residential supports, view our position statement here. Individuals with autism and their family know firsthand the barriers to true community integration and are the most appropriate individuals to help define isolating settings.

Not sure what to say?

Medicaid policy can be very confusing and the state documents that describe programs aren't written in a way that most people can understand. But that shouldn't stop advocates from expressing their opinion. CMS has published a set of exploratory questions that advocates can use to help them think about their experiences and create their message to state officials.

If you are in a waiver program already, use these questions to tell about your experience. For example:

  • What was your experience planning your waiver services? Were you able to choose the services you wanted and get them where and how often you wanted?
  • Does the place where you get your services reflect your needs and preferences? Did you have options to choose from?

If you are not yet receiving waiver services (because you are on a waitlist or otherwise) but expect to be using waiver services in the future, use these questions to talk about what services will be important to you in the future. For example:

  • Do you want to be able to work? If not, what type of meaningful non-work activities would you like to be involved in?
  • Would you like to have roommates or live on your own? How often would you like to have visitors? What types of supports are necessary for you to live as independently as possible?

Alabama To End Medicaid Waiver Services That 'Isolate' Individuals - Autism Speaks - Advocasy

Public reaction sought through December 5

November 24, 2014

Alabamahas proposed changing its Medicaid waiver program for Home- and Community-Based Services (HCBS) in order to comply with a federal directive that prohibits services that "isolate" participants from the general community, and is inviting public reaction. The new rules will affect group homes, adult residential facilities, congregate living health facilities, and other settings.

The goal of the new requirements, according to theAlabama Department of Mental Health, is to focus on the quality of anindividual's experiences; maximize access to community living and the opportunity to receive services in the most integrated setting; and to set quality standards for home- and community-based settings.

Individuals with autism and their caregivers who receive or want Medicaid waiver funding can comment on the new proposal through December 5. Further information is available at the Alabama Department of Mental HealthHERE.

To submit written comments, send them by email to Daphne D. Rosalis at:daphne.rosalis@mh.alabama.gov

What's the issue?

Early this year, the federal government issued new guidelines that may affect how you as an individual with autism or a caregiver will receive services through Medicaid.Alabama has proposed revising its Medicaid program to comply with the new regulations, which can affect services such as in-home or out-of-home residential support, day activities like supported employment or day habilitation, and other services like respite and family support. For more information about these rules, check out this replay from Autism Speaks' live chat.

What can you do about it?

Alabamais now required to seek public input. This is your opportunity as an individual with autism or a caregiver to affect how these changes take place in your state.

The new rules were published in early 2014 by the Centers for Medicare & Medicaid Services (CMS), the federal agency responsible for administering the Medicaid program. The regulations outlined criteria for certain Home and Community-based Services (HCBS) programs operated under specific Medicaid waiver programs.

Medicaid HCBS programs provide a variety of services and supports that individuals with autism need to live in the community. These programs offer an alternative to institutional services for people with disabilities who need ongoing support to meet their functional needs. All states operate HCBS programs that serve individuals with developmental disabilities, like autism, but these programs vary widely from state to state in terms of eligibility requirements and available services. More information about Medicaid HCBS is available online.

What do the new rules mean?

The rules require all Medicaid HCBS programs to allow individuals to be able to choose their services and have access to the community. In particular, states are prohibited from using HCBS funding for settings that isolate individuals from the broader community. This is an important new protection that could help individuals with autism live in settings that are more integrated with the community.

However, in implementing this new requirement, each state Medicaid office has significant discretion in determining whether a given setting results in “isolation.” As a result of the rules, states are beginning to 1) identify the type of settings that may no longer be in compliance with the new rules, and 2) develop plans on how they will change their HCBS programs.

CMS developed these rules over a number of years, and Autism Speaks has long been involved in helping ensure that the needs of the autism community were represented in the development of these new standards. Now that the rules are final, states are beginning to implement the necessary changes to their programs including identifying the type of settings that may no longer be in compliance with the new rule, and to develop plans that outline any changes they will make to their HCBS programs as a result.

What is Autism Speaks doing and what can autism families do?

During this process, states are required to obtain input from advocates and Autism Speaks urges each state to seek and incorporate stakeholders' views on what constitutes isolating settings and how best to integrate individuals into the broader community. For more information on Autism Speaks' position on Housing and Residential supports, view our position statement here. Individuals with autism and their family know firsthand the barriers to true community integration and are the most appropriate individuals to help define isolating settings.

Not sure what to say?

Medicaid policy can be very confusing and the state documents that describe programs aren't written in a way that most people can understand. But that shouldn't stop advocates from expressing their opinion. CMS has published a set of exploratory questions that advocates can use to help them think about their experiences and create their message to state officials.

If you are in a waiver program already, use these questions to tell about your experience. For example:

  • What was your experience planning your waiver services? Were you able to choose the services you wanted and get them where and how often you wanted?
  • Does the place where you get your services reflect your needs and preferences? Did you have options to choose from?

If you are not yet receiving waiver services (because you are on a waitlist or otherwise) but expect to be using waiver services in the future, use these questions to talk about what services will be important to you in the future. For example:

  • Do you want to be able to work? If not, what type of meaningful non-work activities would you like to be involved in?
  • Would you like to have roommates or live on your own? How often would you like to have visitors? What types of supports are necessary for you to live as independently as possible?

Goodwill Industries of the Chesapeake, Inc. to hold 59th Annual Thanksgiving Dinner & Resource Fair - PRNewswire

BALTIMORE, Nov. 24, 2014 /PRNewswire-USNewswire/ -- Goodwill Industries of the Chesapeake will hold its 59th Annual Thanksgiving Dinner and Resource Fair on Wednesday, November 26, 2014 from 11:45 a.m. until 2:45 p.m. at The Baltimore Convention Center. This year over 300 volunteers from...



MV-1 Successfully Achieves Compliance With Latest Federal Safety and Crash Test Requirements - PRNewswire
SOUTH BEND, Ind., Nov. 24, 2014 /PRNewswire/ -- Mobility Ventures LLC, designer and manufacturer of the MV-1 -- the only American-made vehicle that is purpose-built with the wheelchair user in mind -- has successfully completed an updated series of crash tests on the MV-1 that are...

Senate Unlikely To Reconsider UN Disability Treaty - DisabiltyScoop
There is not enough support in the U.S. Senate to warrant another vote on ratification of an international disability rights treaty, according to one of the measure's chief backers.
November 21, 2014

Claims Deadline Approaches in Historic Class Action Settlements - PRNewswire

TORONTO, Nov. 21, 2014 /CNW/ - On November 30th, the claims deadline will expire in the precedent setting class action settlements concerning the Huronia, Rideau and Southwestern Regional Centres. These three class actions settled for $67.7 million in 2013, the largest settlement in...



Drs. Goudie and Marshall named Chief Medical Officers for Toronto 2015 Parapan American Games and Rio 2016 Paralympic Games - PRNewswire

OTTAWA, Nov. 21, 2014 /CNW/ - The Canadian Paralympic Committee is pleased to announce the appointments of Dr. Richard Goudie (Barrie, Ont.) as Chief Medical Officer and Dr. Andrew Marshall (Ottawa, Ont.) as Assistant Chief Medical Officer for Team Canada at the Toronto 2015 Parapan...



Future Uncertain For National Children's Study - DisabiltyScoop
An effort to track the health of 100,000 kids from birth to adulthood may stop before its official start in a potential setback for those looking for answers on autism and other disorders.

Lorri Unumb Honored by Professional Women in Advocacy - Autism Speaks - Advocasy
November 21, 2014

WASHINGTON, DC -- Lorri Unumb, Autism Speaks' vice president for state government affairs, was honored for Excellence in a State Issue Campaignat the annual Professional Women in Advocacy conference held here. National Grassroots Advocacy Director Shelley Hendrix was one of three finalists forExcellence In A Campaign For WomenServing Women.

Over 180 women were nominated in five categories for the annual awards which included finalists from organizations such as AARP, Google, the American Bar Association, the National Association of Manufacturers, the ASPCA, MADD and other groups. Autism Speaks captured three of the nominations, with Shelley Hendrix nominated in two categories.

Lorri Unumb, an attorney based in Lexington, SC, led the fight for Ryan's Law, named after her son with autism, in 2006 in South Carolina to require coverage of autism therapies by private insurers. She later joined Autism Speaks and has helped manage similar successful campaigns in 34 other states.

She has broadened her work to advocate with employers who self-fund their health plans to voluntarily add autism coverage. Approximatelyone-third of self-funded employers now voluntarily provide autism coverage, often acting after their home states enacts lawsrequiring coverage by fully funded health plans.

Hendrix was a finalist for the Excellence in a Campaign For Women Serving Women, "an effort wherein women advocate(s) successfully impacted the outcome of a problem or opportunity on behalf of other women."Hendrix has built and mobilized Autism Speaks' grassroots "army" of advocatesthat has played a prominent role in the enactment of state autism reform laws and which turned the tide in Congress in 2011 when the Combating Autism Act was reauthorized.

PWIA provides professional development and leadership training to women in all areas of advocacy, including federal, state and local government relations, public affairs, community relations, public policy, legislation, Congressional relations, community activism, political engagement and campaigns.


#AUCD2014: Please take a moment to complete the 2014 conference survey - AUCD
Thank you all for an amazing and energizing AUCD 2014 Conference! If you haven't already, please take a moment to complete the 2014 conference survey and tell us what you loved, what you could do without, and how we can continue to improve and build on this year's conference.

NCD Releases Annual Progress Report on National Disability Policy - AUCD
The National Council on Disability (NCD) has released the 2014 edition of National Disability Policy: A Progress Report. The 2014 Progress Report focuses on seven key areas: the Convention on the Rights of People with Disabilities (CRPD), employment access and inclusion, subminimum wage, education outcomes, Medicaid managed care, mental health care, and data trends in disability policy. The report provides policy recommendations in each area with the goal of promoting a more inclusive environment.
November 20, 2014

Deaf And Hard Of Hearing Advocates And Theatre Owners To Hold Joint Press Conference Regarding Proposed Rulemaking On Movie Theater Captioning - PRNewswire
WASHINGTON, Nov. 20, 2014 /PRNewswire-USNewswire/ -- The following is being released by National Association of Theatre Owners: WHEN:  21 November 2014, 10:00 A.M. Eastern WHERE:  The National Press...

ReadSpeaker Launches New Version of ReadSpeaker TextAid - PRNewswire
UPPSALA, Sweden, November 20, 2014 /PRNewswire/ -- ReadSpeaker is excited to announce the latest version of ReadSpeaker TextAid, with a fully redesigned user interface and an updated list of user-friendly features. The user interface - available in four languages with more to come - has...

Seinfeld Now Says He Doesn't Have Autism - DisabiltyScoop
Comedian Jerry Seinfeld is backing off comments he made earlier this month suggesting that he may be on the autism spectrum.

ReadSpeaker startet neue Version von ReadSpeaker TextAid - PRNewswire
UPPSALA, Schweden, November 20, 2014 /PRNewswire/ -- Der persönliche Online-Reader für Schüler und Studierende umfasst jetzt neue Text- und Dokumentenbibliotheksfunktionen.  ReadSpeaker freut sich, die neueste Version von ReadSpeaker TextAid mit vollständig neu...

ReadSpeaker lanserar ny version av ReadSpeaker TextAid - PRNewswire
UPPSALA, Sverige, November 20, 2014 /PRNewswire/ -- I den internetbaserade personliga läsaren för studenter ingår nu nya biblioteksfunktioner för texter och dokument.  ReadSpeaker har glädjen att presentera den senaste versionen av ReadSpeaker TextAid med...

ReadSpeaker lanceert nieuwe versie van ReadSpeaker TextAid - PRNewswire
UPPSALA, Zweden, November 20, 2014 /PRNewswire/ -- De online personal reader voor studenten bevat nu nieuwe tekst- en documentbibliotheekmogelijkheden.  ReadSpeaker is verheugd om de nieuwste versie van ReadSpeaker TextAid aan te kondigen met een volledig vernieuwde...

Vote Planned On Tax-Free Disability Savings Accounts - DisabiltyScoop
With little time to spare, a vote will happen this year on a bill that would allow people with disabilities to save money without jeopardizing their benefits, a key member of Congress says.
November 19, 2014

HelpMeSee Welcomes Matt Kupec As Vice President Of Development And Marketing - PRNewswire

NEW YORK, Nov. 19, 2014 /PRNewswire-USNewswire/ -- HelpMeSee, a global campaign to eliminate blindness caused by treatable cataract, announces that Matt Kupec has been appointed Vice President of Development and Marketing.  Kupec, a veteran fundraiser, comes to HelpMeSee...



Special Olympics Narrows Health Gap Faced by People with Intellectual Disabilities - PRNewswire

WASHINGTON, Nov. 19, 2014 /PRNewswire-USNewswire/ -- Special Olympics released data today outlining the results of its successful two-year old Healthy Communities initiative and announced that it will expand the program from 14 to 100 sites by 2025. Healthy Communities provides...



Integral Senior Living Encourages Families to Take Stock of Aging Loved Ones During Holiday Visits - PRNewswire

CARLSBAD, Calif., Nov. 19, 2014 /PRNewswire/ -- Integral Senior Living (ISL), a senior residence management company, encourages families, during holiday visits with aging loved ones, to check on their health, discuss their senior care and review their important documents. Reuniting at the...



Otologic Pharmaceutics (OPI) Initiates Phase 1 Clinical Study of HNPN-1010 for Hearing Disorders - PRNewswire

OKLAHOMA CITY, Nov. 19, 2014 /PRNewswire/ -- Otologic Pharmaceutics, Inc. (OPI) announced today the initiation of clinical testing of NHPN-1010, its lead product candidate for the treatment of acute sensorineural hearing loss. OPI is a development-stage biopharmaceutical company committed...



Easter Seals Expands Mentorship Program for Young Women with Disabilities to Digital Audiences - PRNewswire

CHICAGO, Nov. 19, 2014 /PRNewswire-USNewswire/ -- Easter Seals is bringing young women with disabilities together through the national expansion of the Thrive program.  Women across the country will now have digital access to the Massachusetts-based program, Easter Seals...



Toymaker Wants Playtime To Be More Inclusive - DisabiltyScoop
The maker of childhood classics like Mr. Potato Head, Play-Doh and Connect 4 is looking to ensure that kids with developmental disabilities know how to engage with its toys too.

Possibility unbound: 25 years of progress for those with disability - CSMonitor.com - AUCD
Thanks to the Americans with Disabilities act - which turns 25 next year - and a demanding and aging baby boom generation, the nation has fewer limits for those with physical impairments.

Kentucky To End Medicaid Waiver Services That 'Isolate' Individuals - Autism Speaks - Advocasy

Public reaction sought through December 5

November 19, 2014

Kentuckyhas proposed changing its Medicaid waiver program for Home- and Community-Based Services (HCBS) in order to comply with a federal directive that prohibits services that "isolate" participants from the general community, and is inviting public reaction. The new rules will affect group homes, adult residential facilities, congregate living health facilities, and other settings.

The goal of the new requirements, according to theKentucky Department of Human Services, "is to facilitate the integration and access of waiver participants into the greater community, including opportunities to seek employment and work in competitive integrated settings, engage in community life, control personal resources, and receive services in the community, to the same degree as individuals not receiving Medicaid HCBS."

Individuals with autism and their caregivers who receive or want Medicaid waiver funding can comment on the new proposal through December 5.Further information is available at the Kentucky Departmentfor Medicaid Services HERE.

To submit written comments, send them by email to CMSfinalHCBRule@ky.gov, or by post mail to:
Department for Medicaid Services
HCB Final Rule Statewide Transition Plan
Commissioners Office
275 E. Main Street, 6W-A
Frankfort, Kentucky 40621

What's the issue?

Early this year, the federal government issued new guidelines that may affect how you as an individual with autism or a caregiver will receive services through Medicaid.Kentucky has proposed revising its Medicaid program to comply with the new regulations, which can affect services such as in-home or out-of-home residential support, day activities like supported employment or day habilitation, and other services like respite and family support. For more information about these rules, check out this replay from Autism Speaks' live chat.

What can you do about it?

Kentuckyis now required to seek public input. This is your opportunity as an individual with autism or a caregiver to affect how these changes take place in your state.

The new rules were published in early 2014 by the Centers for Medicare & Medicaid Services (CMS), the federal agency responsible for administering the Medicaid program. The regulations outlined criteria for certain Home and Community-based Services (HCBS) programs operated under specific Medicaid waiver programs.

Medicaid HCBS programs provide a variety of services and supports that individuals with autism need to live in the community. These programs offer an alternative to institutional services for people with disabilities who need ongoing support to meet their functional needs. All states operate HCBS programs that serve individuals with developmental disabilities, like autism, but these programs vary widely from state to state in terms of eligibility requirements and available services. More information about Medicaid HCBS is available online.

What do the new rules mean?

The rules require all Medicaid HCBS programs to allow individuals to be able to choose their services and have access to the community. In particular, states are prohibited from using HCBS funding for settings that isolate individuals from the broader community. This is an important new protection that could help individuals with autism live in settings that are more integrated with the community.

However, in implementing this new requirement, each state Medicaid office has significant discretion in determining whether a given setting results in “isolation.” As a result of the rules, states are beginning to 1) identify the type of settings that may no longer be in compliance with the new rules, and 2) develop plans on how they will change their HCBS programs.

CMS developed these rules over a number of years, and Autism Speaks has long been involved in helping ensure that the needs of the autism community were represented in the development of these new standards. Now that the rules are final, states are beginning to implement the necessary changes to their programs including identifying the type of settings that may no longer be in compliance with the new rule, and to develop plans that outline any changes they will make to their HCBS programs as a result.

What is Autism Speaks doing and what can autism families do?

During this process, states are required to obtain input from advocates and Autism Speaks urges each state to seek and incorporate stakeholders' views on what constitutes isolating settings and how best to integrate individuals into the broader community. For more information on Autism Speaks' position on Housing and Residential supports, view our position statement here. Individuals with autism and their family know firsthand the barriers to true community integration and are the most appropriate individuals to help define isolating settings.

Not sure what to say?

Medicaid policy can be very confusing and the state documents that describe programs aren't written in a way that most people can understand. But that shouldn't stop advocates from expressing their opinion. CMS has published a set of exploratory questions that advocates can use to help them think about their experiences and create their message to state officials.

If you are in a waiver program already, use these questions to tell about your experience. For example:

  • What was your experience planning your waiver services? Were you able to choose the services you wanted and get them where and how often you wanted?
  • Does the place where you get your services reflect your needs and preferences? Did you have options to choose from?

If you are not yet receiving waiver services (because you are on a waitlist or otherwise) but expect to be using waiver services in the future, use these questions to talk about what services will be important to you in the future. For example:

  • Do you want to be able to work? If not, what type of meaningful non-work activities would you like to be involved in?
  • Would you like to have roommates or live on your own? How often would you like to have visitors? What types of supports are necessary for you to live as independently as possible?

LALA Volverá a Donar a TeletónUSA por Transmisión Televisiva en Vivo - PRNewswire
DALLAS, 18 de noviembre del 2014 /PRNewswire-HISPANIC PR WIRE/ -- LALA, una de las principales empresas de productos lácteos en Estados Unidos y Latino América, hará entrega de una donación a TeletónUSA durante su transmisión en vivo el 12 y 13 de...
November 18, 2014

LALA to Donate Again to TeletonUSA During Live Broadcast - PRNewswire
DALLAS, Nov. 18, 2014 /PRNewswire/ -- LALA, one of the largest dairy products companies in the US and Latin America, will present a check to TeletonUSA during their live fundraising telecast to air December 12 and 13 on Spanish-language television station Univision. LALA and...

Juventas Therapeutics Presents Phase II Data at AHA Scientific Sessions That Shows JVS-100 is Safe, Potentially Effective in Patients with Critical Limb Ischemia - PRNewswire

CLEVELAND, Nov. 18, 2014 /PRNewswire-USNewswire/ -- Juventas Therapeutics Inc., a privately-held, clinical-stage company developing novel therapies for treatment of cardiovascular disease, had clinical data presented at the American Heart Association Scientific Sessions 2014 that show...



Clock Ticking On Plan For Disability Savings Accounts - DisabiltyScoop
Advocates are pushing Congress to act before the end of the year on a bill that would allow people with disabilities to save money without jeopardizing their government benefits.

Pope Looks To Destigmatize Autism - DisabiltyScoop
For the first time, Pope Francis is set to meet with individuals with autism and their families during an international conference on the developmental disorder.

Duct-Taped Teen Receives Apology - DisabiltyScoop
More than a month after a teen with autism was duct-taped to a goalpost and abandoned, those involved in the incident have apologized.

Minnesota To End Medicaid Waivers That 'Isolate' Individuals - Autism Speaks - Advocasy

Public reaction sought through December 17

November 18, 2014

Minnesota has proposed changing its Medicaid waiver program for Home- and Community-Based Services (HCBS) in order to comply with a federal directive that prohibits services that "isolate" participants from the general community, and is inviting public reaction. The new rules will affect group homes, adult residential facilities, congregate living health facilities, and other settings.

"This plan shows how Minnesota will comply with new federal rules for Medical Assistance home and community-based services for people with disabilities and older adults," according to the Minnesota Department of Human Services (DHS)."

"The Centers for Medicare and Medicaid Services (CMS) and DHS designed the new rules so people receiving home and community-based services have full access to the benefits of community living (and) opportunity to receive services in the most integrated setting."

Individuals with autism and their caregivers who receive or want Medicaid waiver funding can comment on the new proposal through December 17. Feedback can be submitted by email toHCBS.Settings@state.mn.us. An explanatory video can be viewed HERE.

To better understand the state's response to the federal Medicaid directive,DHS has created a webpage HERE.

What's the issue?

Early this year, the federal government issued new guidelines that may affect how you as an individual with autism or a caregiver will receive services through Medicaid.Minnesota has proposed revising its Medicaid program to comply with the new regulations, which can affect services such as in-home or out-of-home residential support, day activities like supported employment or day habilitation, and other services like respite and family support. For more information about these rules, check out this replay from Autism Speaks' live chat.

What can you do about it?

Minnesotais now required to seek public input. This is your opportunity as an individual with autism or a caregiver to affect how these changes take place in your state.

The new rules were published in early 2014 by the Centers for Medicare & Medicaid Services (CMS), the federal agency responsible for administering the Medicaid program. The regulations outlined criteria for certain Home and Community-based Services (HCBS) programs operated under specific Medicaid waiver programs.

Medicaid HCBS programs provide a variety of services and supports that individuals with autism need to live in the community. These programs offer an alternative to institutional services for people with disabilities who need ongoing support to meet their functional needs. All states operate HCBS programs that serve individuals with developmental disabilities, like autism, but these programs vary widely from state to state in terms of eligibility requirements and available services. More information about Medicaid HCBS is available online.

What do the new rules mean?

The rules require all Medicaid HCBS programs to allow individuals to be able to choose their services and have access to the community. In particular, states are prohibited from using HCBS funding for settings that isolate individuals from the broader community. This is an important new protection that could help individuals with autism live in settings that are more integrated with the community.

However, in implementing this new requirement, each state Medicaid office has significant discretion in determining whether a given setting results in “isolation.” As a result of the rules, states are beginning to 1) identify the type of settings that may no longer be in compliance with the new rules, and 2) develop plans on how they will change their HCBS programs.

CMS developed these rules over a number of years, and Autism Speaks has long been involved in helping ensure that the needs of the autism community were represented in the development of these new standards. Now that the rules are final, states are beginning to implement the necessary changes to their programs including identifying the type of settings that may no longer be in compliance with the new rule, and to develop plans that outline any changes they will make to their HCBS programs as a result.

What is Autism Speaks doing and what can autism families do?

During this process, states are required to obtain input from advocates and Autism Speaks urges each state to seek and incorporate stakeholders' views on what constitutes isolating settings and how best to integrate individuals into the broader community. For more information on Autism Speaks' position on Housing and Residential supports, view our position statement here. Individuals with autism and their family know firsthand the barriers to true community integration and are the most appropriate individuals to help define isolating settings.

Not sure what to say?

Medicaid policy can be very confusing and the state documents that describe programs aren't written in a way that most people can understand. But that shouldn't stop advocates from expressing their opinion. CMS has published a set of exploratory questions that advocates can use to help them think about their experiences and create their message to state officials.

If you are in a waiver program already, use these questions to tell about your experience. For example:

  • What was your experience planning your waiver services? Were you able to choose the services you wanted and get them where and how often you wanted?
  • Does the place where you get your services reflect your needs and preferences? Did you have options to choose from?

If you are not yet receiving waiver services (because you are on a waitlist or otherwise) but expect to be using waiver services in the future, use these questions to talk about what services will be important to you in the future. For example:

  • Do you want to be able to work? If not, what type of meaningful non-work activities would you like to be involved in?
  • Would you like to have roommates or live on your own? How often would you like to have visitors? What types of supports are necessary for you to live as independently as possible?


Art Guild and Independent Living Center Give Veterans with Disabilities Freedom to Express Artistic Talents - PRNewswire

SACRAMENTO, Calif., Nov. 17, 2014 /PRNewswire/ -- California has the highest number of veterans of any state in the nation with more than 2 million military veterans calling the Golden State home. Many of these veterans return home with "service-connected" disabilities, particularly...



Autism Speaks Honors The Nation's Top Advocates For 2014 - Autism Speaks - Advocasy

Georgia's Anna and Ava Bullard win the Speak Out Award

November 17, 2014

NASHVILLE, TN -- Autism Speaks announced its 2014 advocacy awards at the 6th annual Autism Law Summit held here, presenting the Speak Out Award to Anna Bullard and her daughter Ava from Georgia. The awards are presented at the annual conference to honor those individuals and groups whose advocacy on behalf of people with autism stood out during the year.

The Speak Out Award is presented on behalf of Autism Speaks Co-founders Bob and Suzanne Wright to individuals who have gone above and beyond to promote Autism Speaks and its mission in the media. Anna Bullard (pictured right with Autism Speaks State Government Affairs Directors Judith Ursitti and Mike Wasmer) was honored this year with her daughter Ava, who has autism,for their efforts to get autism insurance reform passed in Georgia.

"You are receiving this award in recognition of your role in raising awareness of the need for autism insurance reform in media outlets across Georgia and your powerful video about your daughter, Ava, and her journey with autism," the Wrights said in their award letter. "The impact of your advocacy efforts and creativity of your video demonstrate a true commitment to spreading autism awareness and understanding to others."

More than 180 advocates from 38 states came to Nashville to attend the two-day summit. The conference addressed the latest developments with autism insurance reform campaigns, legal challenges, Medicaid changes, the Affordable Care Act, military families and adult services. During the conference, Washington was named the 38th state to enact autism insurance reform.

The Utah Autism Coalition, represented by President Jon Owen [center] and past Vice President Christine Passey, were honored as the advocacy group of the year. Working with state Senator Brian Shiozawa, the Coalition helped make Utah the 35th state to enact autism insurance reform in April. Passey went on to win election to the Utah House of Representatives.

The 2012 Autism Law Summit was hosted in Salt Lake City to help build the campaign that led to enactment of the bill.

Nebraska became the 36th state to enact reform on April 21 when legislation sponsored by Sen. Colby Coash was signed into law by Gov. Dave Heineman. Nebraska moms Vicky Depenbusch, Colleen Jankovich, Maria Lepinski and Cathy Martinez were honored as the Parent Advocates of the Year.

Sandi Marcus and Melissa Solares of Georgia were honored as the Grassroots Advocates of the Year for their efforts to organize families across Georgia in support of autism insurance reform legislation.

Melissa [center] and Sandi [right] were honored by National Grassroots Advocacy Director Shelley Hendrix for buildingan organization that will push the Georgia legislature to expand coverage from state employees to private health plans in 2015.

California Insurance Commissioner Dave Jones was namedExecutive Championfor his strong advocacy on behalf of families with autism. In April, Jones cited California's Mental Health Parity Act in ordering private insurers to stop delaying and denying claims for autism treatment.

Kristin Jacobson [right], who leads California's Autism Deserves Equal Coverage, was presented a new award for her efforts to improve treatment for people with autism. Kristin helped spearhead efforts that made California the first state in the nation to respond to a July federal directive to the states to cover autism treatment through their Medicaid programs.

The Attorney of the Year was awarded to Cheryl Krause, a founding member of the Autism Speaks Legal Resource Center who was named earlier this to the 3rd Circuit U.S. Court of Appeals in Philadelphia. Krause wrote a friend-of-the-court brief for Autism Speaks submitted in Burke v Independence Blue Cross regarding an insurance denial for autism coverage. The Pennsylvania Supreme Court recently decided for the family.

Gina Green, PhD, BCBA-D, a founding Director of the Association of Professional Behavior Analysts, was honored as Provider of the Year. (Green [center] with Autism Speaks Vice President for State Government Affairs Lorri Unumb [left] and Judith Ursitti)

Judith Ursitti,who presented the award, said after her son Jack was diagnosed with autism, "I didn't know what to, so I bought a book. It was hers. Since then, so many of us have had the privilege of working alongside her."

An award was presented by Mike Wasmer to his fellow Kansan Jennifer Smith for her work as a parent advocate earlier this year in the successful enactment of legislation expanding Kansas' 2010 autism insurance reform law. The original law was limited to state employees and expanded in 2014 to cover private health plans.

The"Battle Hamster" award, presented to an advocate for their persistence in taking on autism insurance issues was presented to Paul Terdal of Oregon. Terdal [pictured (left) with Dan and Lorri Unumb]played a prominent role in the enactment of the state's 2013 autism insurance reform law, then pursued followup work with state regulators to strengthen and accelerate the coverage.

Last Friday, his efforts bore fruit when Oregon Insurance Commissioner Laura Cali directed the state's insurers to step up their coverage of autism treatment to comply with the state's Mental Health Parity Act.

November 17, 2014

Leading Public Safety Orgs React with Anger, Offer Alternatives to Secret Carrier Deal on 9-1-1 Location - PRNewswire

WASHINGTON, Nov. 17, 2014 /PRNewswire-USNewswire/ -- More than a dozen of the nation's leading public safety advocates and organizations reacted with anger and alternative approaches to a carrier-backed proposal announced on Friday that would replace the FCC's proposed public safety rules...



States Cracking Down On Accessible Parking Abuse - DisabiltyScoop
Stiffer penalties and stepped up enforcement are among the measures states are taking to help ensure that accessible parking spaces are available for those who truly need them.
November 15, 2014

Washington Becomes State #38 To Require Autism Benefits - Autism Speaks - Advocasy

Legal settlements plus state order equals autism insurance reform

November 15, 2014

NASHVILLE, TN -- Autism Speaks welcomed Washingtonas the 38th state to enact autism insurance reform during the 6th annualAutism Law Summit held here today. Washington became the first state torequire private insurers to cover medicallynecessary treatment of autism through litigation; the previous 37 states enacted specificinsurance reform laws.

The Washington Autism Alliance & Advocacy (WAAA) teamed up with Seattle attorney Eleanor Hamburger in pursuing a series of successful state and federal class action lawsuits against Washington's major insurance carriers as well as the state employees health benefit plan.

WAAA Founder Arzu Forough [left] and staff attorney Mira Posner celebrate in Nashville

The most recent case, OST v Regence, led to a unanimous state Supreme Court rulingdirecting Regence Blue Shield, the state's largest private insurer to stop enforcing blanket exclusions for medically necessary mental health coverage, such as applied behavior analysis (ABA) for autism. Hamburger within days then announced she had reached a settlement with Regence of state and federal class action suits.

The proposed settlement would require coverage for medically necessary speech, occupational and physical therapies and ABA therapy to treat mental health conditions, including autism. Exclusions, age limits, monetary caps and visit limits would all be prohibited. A $6 million settlement fund would be established by Regence to reimburse policyholders whose previous claims for autism coverage were denied.

The Supreme Court decision then promptedstate Insurance Commissioner Mike Kreidlerto direct all state-regulated private healthplans toprovide coverage in 2015 and to reconsider all claims denied since 2006 on the basis of ablanket exclusion.The order also covers new health plans sold through Washington Healthplanfinder, the state's Marketplace created under the Affordable Care Act.

The state and federal class actions were all brought on the basis that the blanket exclusions violatestate and federal mental health parity law.

"We've always known that this was the law," said Forough, who has two sons on the autism spectrum. "It's been really gratifying watching these cases over the lastsix yearsclarify the law. But what really brings me joy is all the families who will not even know where this benefit came from. It will just be there."

The series of class action lawsuits began when Forough, as a state employee, sued the Washington Health Care Authority for denying her sons' needed autism treatment. Through WAAA, Forough then helped assemble plaintiffs for successful class actions brought by Hamburger against Regence, Premera Blue Cross and Group Health Cooperative. Earlier this year, a federal class action was brought against Boeing in a case that will involve self-insured, or so-called ERISA, employers.

In his letter to insurers issued last month, Kreidler directed that claims for medically necessary services could no longer be denied on the basis of blanket or categorical exclusions. If current insurance contracts do contain exclusions, then policyholders must be notified of the "correct coverage standard." Health plans to be issued in 2015 will be reviewed for compliance.

“With this settlement and the recent (state) Supreme Court decision, the standard for coverage in Washington state is clearly established,” said Hamburger, of Sirianni Youtz Spoonemore Hamburger.

During the law summit, the Washington state representatives celebrated with advocates from Utah and Nebraska, which also enacted reform laws in 2014. Kansas and Maine were also honored for expanding their original autism insurance reform laws.

November 14, 2014

Minorities Often Skipped In Autism Identification - DisabiltyScoop
The number of schoolchildren with autism has increased nationwide in recent years, but a new study suggests that some kids are still being overlooked.

Teen Lands Venture Capital For Accessibility Device - DisabiltyScoop
A 13-year-old has become the world's youngest tech entrepreneur to receive venture capital, all for a device he designed to improve accessibility for people with disabilities.

Rising Tide Car Wash COO Tom D'Eri, 25, Selected by Miami Herald as a '20 Under 40' Emerging South Florida Leader - PRNewswire

PARKLAND, Fla., Nov. 14, 2014 /PRNewswire/ -- At the young age of 25, Rising Tide Car Wash COO Tom D'Eri is already leading the social entrepreneurship movement. His dedication to empowering young adults with autism and inspiring communities to change their perception of their...


November 13, 2014

Canadian Paralympic Committee congratulates Sochi 2014 flag bearer and para-alpine ski champion Josh Dueck on career - PRNewswire

OTTAWA, Nov. 13, 2014 /CNW/ - The Canadian Paralympic Committee is proud to congratulate three-time Paralympic medallist Josh Dueck (Kimberley, B.C), a champion and trailblazer in para-alpine skiing, who announced his retirement earlier today. Dueck won gold and silver medals at the...



18th Annual Best Buddies Miami Gala: Southeast Asia - PRNewswire

MIAMI, Nov. 13, 2014 /PRNewswire-USNewswire/ -- Best Buddies International, a groundbreaking nonprofit founded in 1989 by Anthony K. Shriver to establish a global volunteer movement that creates opportunities for one-to-one friendships, integrated employment and leadership...



ADA 25th Anniversary Legacy Tour Stops at Bay Area Abilities Expo, November 21-23 - PRNewswire

SAN JOSE, Calif., Nov. 13, 2014 /PRNewswire/ -- To commemorate the upcoming 25th anniversary of the historic passing of the Americans with Disabilities Act (ADA25), the long-anticipated ADA Legacy Tour will make a stop at Abilities Expo Bay Area on November 21-23, 2014 at the San...



The SaludArte Foundation, Mercantil Commercebank And Brilla Capital Join To Present Innovative Classical Performance Series - PRNewswire

CORAL GABLES, Fla., Nov. 13, 2014 /PRNewswire/ -- In a strong commitment to support Miami's burgeoning fine arts sector, a group of organizations have joined to present an innovative series of classical music concerts and performances. The groundbreaking program, "LiVE,"...



Schools Must Offer Communication Supports, Feds Say - DisabiltyScoop
The Obama administration is reminding schools of their wide-ranging responsibilities to students with disabilities who struggle with speech and other communication difficulties.
November 12, 2014

Accessible-Housing Nonprofit Ramps Up with $10K Partnership Grant from Frost Bank and FHLB Dallas - PRNewswire

AUSTIN, Texas, Nov. 12, 2014 /PRNewswire-USNewswire/ -- Please join representatives from Frost Bank and the Federal Home Loan Bank of Dallas (FHLB Dallas) at 11:00 a.m., November 13, 2014, at the ADAPT office, 1640-A E. 2nd Street, Austin, as they present a $10,000 Partnership Grant...



Family of Rasheen Rose Sues NYS Agency for Contempt of Court - PRNewswire
BROOKLYN, N.Y., Nov. 12, 2014 /PRNewswire/ -- Shaniece Luke, the sister of Rasheen Rose, a severely autistic man who died while under NY State care*, has filed a contempt of court lawsuit in Federal Court against the NYS Office of People With Developmental Disabilities...

Goodwill Industries of the Chesapeake, Inc. to hold 59th Annual Thanksgiving Dinner & Resource Fair - PRNewswire

BALTIMORE, Nov. 12, 2014 /PRNewswire-USNewswire/ -- Goodwill Industries of the Chesapeake will hold its 59th Annual Thanksgiving Dinner and Resource Fair on Wednesday, November 26, 2014 from 11:45 a.m. until 2:45 p.m. at the Baltimore Convention Center. This year over 300 volunteers...



Increasingly, Dentists Tailoring Care For Kids With Special Needs - DisabiltyScoop
Dentists often rely on restraint and sedation to treat kids with disabilities, but with the right approach, these children are learning the skills to be treated just like other patients.

U.S. Census Bureau Daily Feature for November 12 - PRNewswire

WASHINGTON, Nov. 12, 2014 /PRNewswire-USNewswire/ -- Following is the daily "Profile America" feature from the U.S. Census Bureau: NATIONAL FAMILY CAREGIVERS MONTH Profile America — Wednesday, November 12th. November is National Family Caregivers Month, honoring the great number...


November 11, 2014

Photo Release / Flash quote: Paralympians lay wreaths across Canada for Remembrance Day - PRNewswire

OTTAWA, Nov. 11, 2014 /CNW/ - Some of Canada's most accomplished Paralympic athletes paid their respects to Canada's veterans in Remembrance Day ceremonies across the country this morning, laying wreaths in ceremonies in Vancouver, Calgary, Winnipeg, Toronto, Ottawa and...



The Best in Disability Advertising Awarded to Duracell at ANA Multicultural Marketing & Diversity Conference - PRNewswire

Duracell and Creative Team Saatchi & Saatchi Announced as Winner of the First Ever ANA Multicultural Excellence Award in the People with Disabilities category TORONTO, Nov. 11, 2014 /CNW/ - Monday evening, at its Multicultural Marketing & Diversity Conference in Miami, FL., the...



Claim: Special Education Student ‘Caged' In Class - DisabiltyScoop
A 7-year-old with intellectual disability was allegedly locked in a makeshift cage at school by her first-grade teacher.

Bath And Body Works Apologizes For Disability Snub - DisabiltyScoop
A field trip to the mall went south when teachers say an employee at Bath and Body Works refused to allow their group of students with special needs to enter the store.

Families Dealt Setback In ADA Suit Against Disney - DisabiltyScoop
A federal lawsuit challenging broad changes to Disney's theme park access policy for people with disabilities has hit a roadblock.
November 10, 2014

Affordable Housing Program Grant to Help 14 Low-Income Borrowers with Disabilities Achieve Homeownership - PRNewswire

JACKSON, Miss., Nov. 10, 2014 /PRNewswire-USNewswire/ -- The University of Southern Mississippi Institute for Disability Studies in Hattiesburg has received a $147,000 grant from the Federal Home Loan Bank of Dallas (FHLB Dallas) through its member institution, BankPlus. The organization...



Mobility Ventures' MV-1 Accommodates Two Wheelchair Users at Once Providing The 'Solution for Inclusion' for Government Fleets, For-Hire Operators and Families - PRNewswire

SOUTH BEND, Ind., Nov. 10, 2014 /PRNewswire/ -- The Mobility Ventures MV-1 is in a class of its own as being recognized as the only American made, purpose-built accessible vehicle that has the ability to accommodate two wheelchair users and has passed rigorous highway crash test...



When Disabled Veterans Come Home What Do They Come Home to? - PRNewswire

STATESVILLE, N.C., Nov. 10, 2014 /PRNewswire/ -- A month before she left the Navy, Janny Romanosky bought a foreclosed home in Greenville, SC that was in bad need of repair. What Romanosky didn't realize was once she left the navy – she too was in bad need of repair. When she...



In Honor of Veteran's Day, Gold Crest Care Center, a Leading Bronx Nursing Home, is Hosting an Annual Awards Ceremony for the Facility's Eleven Decorated Veterans - PRNewswire

BRONX, N.Y., Nov. 10, 2014 /PRNewswire/ -- In honor of Veterans Day, Gold Crest Care Center, a top NYC Nursing Home, is spotlighting the facility's annual Veterans Day Awards Ceremony for the 11 decorated veterans currently residing at the Bronx nursing home. The event will be held...



Tune in to Hallmark Channel's "Home and Family Veteran's Week" This Week for a Must-see Military Caregiving Series Spotlighting the work of Easter Seals and Elizabeth Dole Foundation - PRNewswire

CHICAGO, Nov. 10, 2014 /PRNewswire-USNewswire/ -- Easter Seals and Caring for Military Families: The Elizabeth Dole Foundation have created a three-part series for Hallmark "Home and Family" geared toward millions of military caregivers – showing them they are not alone in their...



Tips for Long-Distance Caregivers - PRNewswire

CHICAGO, Nov. 10, 2014 /PRNewswire-USNewswire/ -- Every three weeks, Pam McNamara boards a plane and travels to Omaha to visit her parents. Her mom, who suffers from advanced dementia and is confined to a wheelchair, now requires near-constant care. McNamara helps manage her care...



Study Offers Clues To Soaring Autism Rates - DisabiltyScoop
The substantial rise in autism in recent years is primarily, but not entirely, due to changes in how the developmental disorder is defined and reported, a new study suggests.
November 8, 2014

Canadian Paralympic coaches honored at Petro-Canada Sport Leadership Awards Gala - PRNewswire

OTTAWA, Nov. 7, 2014 /CNW/ - Many of Canada's most accomplished Paralympic coaches were honored tonight with Petro-Canada Coaching Excellence Awards at the Petro-Canada Sport Leadership Awards Gala presented by the Coaching Association of Canada this evening in Ottawa. Receiving the...


November 7, 2014

Jerry Seinfeld: ‘I Think I'm On The Spectrum' - DisabiltyScoop
Comedian Jerry Seinfeld says he believes he may be on the autism spectrum.

Teens Admit To Charges In Ice Bucket Case - DisabiltyScoop
Three teens admitted this week to dumping a bucket containing urine, tobacco and spit on a 15-year-old with autism who thought he was participating in the "ice bucket challenge."

More With Disabilities Finding Jobs - DisabiltyScoop
As the job market shows signs of improvement, statistics from the U.S. Department of Labor suggest people with disabilities are making gains as well.

Five More ERISA Employers Volunteer Autism Coverage In Health Plans - Autism Speaks - Advocasy

ABA, other treatments to be covered for employees

November 07, 2014

NEW YORK -- Autism Speaks has learned of another five employers that will voluntarily offer coverage in their employee health benefit plans for autism treatment, including Applied Behavior Analysis (ABA). The companies each offer self-insured plans that are regulated under federal ERISA law and therefore are exempt from autism insurance reform laws enacted in 37 states.

“There's been a huge spike in the number of companies offering coverage,” Lorri Unumb, Autism Speaks' vice president for state government affairs, recently told Workforce.com.

“Employers have been very receptive,” Unumb said. “In the self-funded world, many companies pride themselves on having excellent benefits to stay competitive.”

To help convince your empoyer to cover autism, download our ERISA Tool Kit HERE.

The new employers include:

Bloomberg BNA
Arlington, VA

A wholly owned subsidiary of Bloomberg, Bloomberg BNA, provideslegal, tax, regulatory, and business information for professionals. It employsmore than 2,500 reporters, correspondents, andpractitioners to provideexpert analysis, news, practice tools, and guidance.

It began in 1929 as the Bureau of National Affairs, Inc.

Genentech
South San Francisco

Founded in 1976, Genentech Inc., is abiotechnologycorporationwhich became a subsidiary ofRochein 2009. It employs about 11,146 people and has been inclued on Fortune Magazine's "100 best Companies To Work For" list for 16 years.

Nike
Beaverton, Oregon

Nike, Inc.is amultinational corporation that designs,manufactures and sells footwear, apparel, equipment, accessories and services. With 44,000 employees, Nike isone of the world's largest suppliers ofathletic shoesandapparel.

Novartis Institutes for BioMedical Research (NIBR)
Cambridge, MA

With 3,000 employees in Cambridge, NIBR is the global pharmaceutical research organization for Novartis, conducting researchoninnovative medicines to treat disease and improve human health.

T. Rowe Price
Baltimore

Founded in 1937,T.RowePriceis a global investment management organization that was managing$731.2 billion in assetsas of September 30, 2014. With 5,372 employees, theorganizationservesindividual and institutional investors, retirement plans, and financial intermediaries. The company also offers a variety ofinvestment planning and guidance resources.


ND To End Medicaid Waiver Services That 'Isolate' Individuals - Autism Speaks - Advocasy

Changes effect home- and community-based services

November 07, 2014

North Dakotahas proposed changing its Medicaid waiver program for Home- and Community-Based Services (HCBS) in order to comply with a federal directive that prohibits services that "isolate" participants from the general community, and is inviting public reaction. The new rules will affectadult residential facilities, adult family foster care, residential habilitation, adult day care and health, and other waiver programs.

"States are required to ensure all HCBS settings comply with the new federal requirements to ensure that all individuals receiving HCBS are integrated in and have full access to their communities, including opportunities to engage in community life, work in integrated environments, and control their own personal resources," according to the North Dakota Department of Human Services (DHS) which drafted the state's plan.

"While North Dakota is the third least populous state, it has the fastest growing population," according to DHS. "The rapid population growth has placed increased demand on social service and human service systems that are trying to assist individuals who have moved to the State without family supports or adequate housing."

Individuals with autism and their caregivers who receive or want Medicaid waiver funding can comment on the new proposal,through November 14. Feedback can be submitted by:
Email: DHSHCBS@ND.GOV
Phone: (800)-755-2604 or (701)-328-4602
Fax: (701)-328-4875
Mail: ND DHS Medical Services Division, 600 E Boulevard Ave Dept. 325, Bismarck, ND 58505-0250

What's the issue?

Early this year, the federal government issued new guidelines that may affect how you as an individual with autism or a caregiver will receive services through Medicaid.North Dakotahas proposed revising its Medicaid program to comply with the new regulations, which can affect services such as in-home or out-of-home residential support, day activities like supported employment or day habilitation, and other services like respite and family support. For more information about these rules, check out this replay from Autism Speaks' live chat.

What can you do about it?

North Dakotais now required to seek public input. This is your opportunity as an individual with autism or a caregiver to affect how these changes take place in your state.

The new rules were published in early 2014 by the Centers for Medicare & Medicaid Services (CMS), the federal agency responsible for administering the Medicaid program. The regulations outlined criteria for certain Home and Community-based Services (HCBS) programs operated under specific Medicaid waiver programs.

Medicaid HCBS programs provide a variety of services and supports that individuals with autism need to live in the community. These programs offer an alternative to institutional services for people with disabilities who need ongoing support to meet their functional needs. All states operate HCBS programs that serve individuals with developmental disabilities, like autism, but these programs vary widely from state to state in terms of eligibility requirements and available services. More information about Medicaid HCBS is available online.

What do the new rules mean?

The rules require all Medicaid HCBS programs to allow individuals to be able to choose their services and have access to the community. In particular, states are prohibited from using HCBS funding for settings that isolate individuals from the broader community. This is an important new protection that could help individuals with autism live in settings that are more integrated with the community.

However, in implementing this new requirement, each state Medicaid office has significant discretion in determining whether a given setting results in “isolation.” As a result of the rules, states are beginning to 1) identify the type of settings that may no longer be in compliance with the new rules, and 2) develop plans on how they will change their HCBS programs.

CMS developed these rules over a number of years, and Autism Speaks has long been involved in helping ensure that the needs of the autism community were represented in the development of these new standards. Now that the rules are final, states are beginning to implement the necessary changes to their programs including identifying the type of settings that may no longer be in compliance with the new rule, and to develop plans that outline any changes they will make to their HCBS programs as a result.

What is Autism Speaks doing and what can autism families do?

During this process, states are required to obtain input from advocates and Autism Speaks urges each state to seek and incorporate stakeholders' views on what constitutes isolating settings and how best to integrate individuals into the broader community. For more information on Autism Speaks' position on Housing and Residential supports, view our position statement here. Individuals with autism and their family know firsthand the barriers to true community integration and are the most appropriate individuals to help define isolating settings.

Not sure what to say?

It is important that the state hears directly from you about what you or your loved one with autism needs to live as independently as possible. CMS has published a set of exploratory questions that advocates can use to help them think about their experiences and create their message to state officials.

If you are in a waiver program already, use these questions to tell about your experience. For example:

  • What was your experience planning your waiver services? Were you able to choose the services you wanted and get them where and how often you wanted?
  • Does the place where you get your services reflect your needs and preferences? Did you have options to choose from?

If you are not yet receiving waiver services (because you are on a waitlist or otherwise) but expect to be using waiver services in the future, use these questions to talk about what services will be important to you in the future. For example:

  • Do you want to be able to work? If not, what type of meaningful non-work activities would you like to be involved in?
  • Would you like to have roommates or live on your own? How often would you like to have visitors? What types of supports are necessary for you to live as independently as possible?

Over 570 Employees with Disabilities Settle Discrimination Class Action Against the Social Security Administration - PRNewswire

BALTIMORE, Nov. 6, 2014 /PRNewswire/ -- The United States Equal Employment Opportunity Commission has preliminarily approved a class-wide settlement on behalf of a class of over 570 current and former SSA employees with disabilities. The Settlement Agreement provides for...


November 6, 2014

At Long Last, Athlete With Down Syndrome To Compete - DisabiltyScoop
A man with Down syndrome who sued after allegedly being denied the opportunity to participate in the sport he loves due to his disability is finally getting a chance.

SC To End Medicaid Waiver Services That 'Isolate' Individuals - Autism Speaks - Advocasy

Public reaction sought through December 4

November 06, 2014

South Carolina ischanging its Medicaid waiver program for Home- and Community-Based Services (HCBS) in order to comply with a federal directive that prohibits services that "isolate" participants from the general community, and is inviting public reaction. The new rules will affect Residential, Day, and Adult Day Health Care centers, and other settings.

"The Home and Community-Based Services (HCBS) rule creates a more outcome-oriented definition of home and community-based settings," according to Healthy Connections, the state's Medciaid agency. "It does not just look at location, geography or physical characteristics. It looks at how a person spends their day, where they spend their day and with whom they spend their day. The purpose of the HCBS rule is to enable people to receive services in their home and community, keeping them out of institutions."

Individuals with autism and their caregivers who receive or want Medicaid waiver funding can contribute to the state's draft plan,summarized HERE, at a series of public meetings scheduled statewide through December 4. Visit the "Events" page HERE for the full schedule.

What's the issue?

Early this year, the federal government issued new guidelines that may affect how you as an individual with autism or a caregiver will receive services through Medicaid.South Carolinahas proposed revising its Medicaid program to comply with the new regulations, which can affect services such as in-home or out-of-home residential support, day activities like supported employment or day habilitation, and other services like respite and family support. For more information about these rules, check out this replay from Autism Speaks' live chat.

What can you do about it?

South Carolinais now required to seek public input. This is your opportunity as an individual with autism or a caregiver to affect how these changes take place in your state.

The new rules were published in early 2014 by the Centers for Medicare & Medicaid Services (CMS), the federal agency responsible for administering the Medicaid program. The regulations outlined criteria for certain Home and Community-based Services (HCBS) programs operated under specific Medicaid waiver programs.

Medicaid HCBS programs provide a variety of services and supports that individuals with autism need to live in the community. These programs offer an alternative to institutional services for people with disabilities who need ongoing support to meet their functional needs. All states operate HCBS programs that serve individuals with developmental disabilities, like autism, but these programs vary widely from state to state in terms of eligibility requirements and available services. More information about Medicaid HCBS is available online.

What do the new rules mean?

The rules require all Medicaid HCBS programs to allow individuals to be able to choose their services and have access to the community. In particular, states are prohibited from using HCBS funding for settings that isolate individuals from the broader community. This is an important new protection that could help individuals with autism live in settings that are more integrated with the community.

However, in implementing this new requirement, each state Medicaid office has significant discretion in determining whether a given setting results in “isolation.” As a result of the rules, states are beginning to 1) identify the type of settings that may no longer be in compliance with the new rules, and 2) develop plans on how they will change their HCBS programs.

CMS developed these rules over a number of years, and Autism Speaks has long been involved in helping ensure that the needs of the autism community were represented in the development of these new standards. Now that the rules are final, states are beginning to implement the necessary changes to their programs including identifying the type of settings that may no longer be in compliance with the new rule, and to develop plans that outline any changes they will make to their HCBS programs as a result.

What is Autism Speaks doing and what can autism families do?

During this process, states are required to obtain input from advocates and Autism Speaks urges each state to seek and incorporate stakeholders' views on what constitutes isolating settings and how best to integrate individuals into the broader community. For more information on Autism Speaks' position on Housing and Residential supports, view our position statement here. Individuals with autism and their family know firsthand the barriers to true community integration and are the most appropriate individuals to help define isolating settings.

Not sure what to say?

It is important that the state hears directly from you about what you or your loved one with autism needs to live as independently as possible. CMS has published a set of exploratory questions that advocates can use to help them think about their experiences and create their message to state officials.

If you are in a waiver program already, use these questions to tell about your experience. For example:

  • What was your experience planning your waiver services? Were you able to choose the services you wanted and get them where and how often you wanted?
  • Does the place where you get your services reflect your needs and preferences? Did you have options to choose from?

If you are not yet receiving waiver services (because you are on a waitlist or otherwise) but expect to be using waiver services in the future, use these questions to talk about what services will be important to you in the future. For example:

  • Do you want to be able to work? If not, what type of meaningful non-work activities would you like to be involved in?
  • Would you like to have roommates or live on your own? How often would you like to have visitors? What types of supports are necessary for you to live as independently as possible?

Louisiana To End Medicaid Waiver Services That 'Isolate' Individuals - Autism Speaks - Advocasy

Public reaction sought through December 17

November 06, 2014

Louisianahas proposed changing its Medicaid waiver program for Home- and Community-Based Services (HCBS) in order to comply with a federal directive that prohibits services that "isolate" participants from the general community, and is inviting public reaction. The new rules will affect group homes, adult residential facilities, congregate living health facilities, and other settings.

"The purpose of these regulations is to ensure that individualsreceive Medicaid HCBS in settings that are integrated and support full access to the greater community," according to the state Office for Citizens with Developmental Disabilities (OCDD), which developed the plan."This includes opportunities to seek employment and work in competitive and integrated settings, engage in community life, control personal resources, and receive services in the community, to the same degree as individuals who do not receive HCBS.

"The regulations also aim to ensure that individuals have free choice of where they live and who provides services to them, as well as ensuring that individual rights are not restricted," according to OCDD.

Individuals with autism and their caregivers who receive or want Medicaid waiver funding can comment on the new proposal, summarized HERE, through December 17.Feedback can be submitted by email to: ocdd-hcbs@la.gov.

What's the issue?

Early this year, the federal government issued new guidelines that may affect how you as an individual with autism or a caregiver will receive services through Medicaid.Louisiana has proposed revising its Medicaid program to comply with the new regulations, which can affect services such as in-home or out-of-home residential support, day activities like supported employment or day habilitation, and other services like respite and family support. For more information about these rules, check out this replay from Autism Speaks' live chat.

What can you do about it?

Louisianais now required to seek public input. This is your opportunity as an individual with autism or a caregiver to affect how these changes take place in your state.

The new rules were published in early 2014 by the Centers for Medicare & Medicaid Services (CMS), the federal agency responsible for administering the Medicaid program. The regulations outlined criteria for certain Home and Community-based Services (HCBS) programs operated under specific Medicaid waiver programs.

Medicaid HCBS programs provide a variety of services and supports that individuals with autism need to live in the community. These programs offer an alternative to institutional services for people with disabilities who need ongoing support to meet their functional needs. All states operate HCBS programs that serve individuals with developmental disabilities, like autism, but these programs vary widely from state to state in terms of eligibility requirements and available services. More information about Medicaid HCBS is available online.

What do the new rules mean?

The rules require all Medicaid HCBS programs to allow individuals to be able to choose their services and have access to the community. In particular, states are prohibited from using HCBS funding for settings that isolate individuals from the broader community. This is an important new protection that could help individuals with autism live in settings that are more integrated with the community.

However, in implementing this new requirement, each state Medicaid office has significant discretion in determining whether a given setting results in “isolation.” As a result of the rules, states are beginning to 1) identify the type of settings that may no longer be in compliance with the new rules, and 2) develop plans on how they will change their HCBS programs.

CMS developed these rules over a number of years, and Autism Speaks has long been involved in helping ensure that the needs of the autism community were represented in the development of these new standards. Now that the rules are final, states are beginning to implement the necessary changes to their programs including identifying the type of settings that may no longer be in compliance with the new rule, and to develop plans that outline any changes they will make to their HCBS programs as a result.

What is Autism Speaks doing and what can autism families do?

During this process, states are required to obtain input from advocates and Autism Speaks urges each state to seek and incorporate stakeholders' views on what constitutes isolating settings and how best to integrate individuals into the broader community. For more information on Autism Speaks' position on Housing and Residential supports, view our position statement here. Individuals with autism and their family know firsthand the barriers to true community integration and are the most appropriate individuals to help define isolating settings.

Not sure what to say?

It is important that the state hears directly from you about what you or your loved one with autism needs to live as independently as possible. CMS has published a set of exploratory questions that advocates can use to help them think about their experiences and create their message to state officials.

If you are in a waiver program already, use these questions to tell about your experience. For example:

  • What was your experience planning your waiver services? Were you able to choose the services you wanted and get them where and how often you wanted?
  • Does the place where you get your services reflect your needs and preferences? Did you have options to choose from?

If you are not yet receiving waiver services (because you are on a waitlist or otherwise) but expect to be using waiver services in the future, use these questions to talk about what services will be important to you in the future. For example:

  • Do you want to be able to work? If not, what type of meaningful non-work activities would you like to be involved in?
  • Would you like to have roommates or live on your own? How often would you like to have visitors? What types of supports are necessary for you to live as independently as possible?

Georgia To End Medicaid Waiver Services That 'Isolate' Individuals - Autism Speaks - Advocasy

Public reaction sought through December 5

November 06, 2014

Georgia has proposed changing its Medicaid waiver program for Home- and Community-Based Services (HCBS) in order to comply with a federal directive that prohibits services that "isolate" participants from the general community, and is inviting public reaction. The new rules will affect group homes, adult residential facilities, congregate living health facilities, and other settings.

"The new rules define settings that are not community-like and cannot be used to provide federally funded home and community based services," according to the Georgia Department of Community Health (DCH), which prepared the state's plan. "The purpose of these rules is to ensure that people live in the community and who receive home and community-based waiver services have opportunities to access their community and receive services in the most integrated settings.

"This includes opportunities to seek employment and work in competitive settings, engage in community life, control personal resources and participate in the community just as people who live in the community and do not receive home and community-based services do," DCH continued. "The new rules stress the importance of ensuring that people choose service settings from options and are able to exercise rights and optimize independence."

Individuals with autism and their caregivers who receive or want Medicaid waiver funding can comment on the new proposal, summarized HERE,through December 5.

DCH has scheduled five Town Hall meetings Nov. 13-20; in addition, feedback can be submitted by email to HCBSTransition@dch.ga.gov. The schedule for the Town Halls is HERE.

What's the issue?

Early this year, the federal government issued new guidelines that may affect how you as an individual with autism or a caregiver will receive services through Medicaid.Georgia has proposed revising its Medicaid program to comply with the new regulations, which can affect services such as in-home or out-of-home residential support, day activities like supported employment or day habilitation, and other services like respite and family support. For more information about these rules, check out this replay from Autism Speaks' live chat.

What can you do about it?

Georgiais now required to seek public input. This is your opportunity as an individual with autism or a caregiver to affect how these changes take place in your state.

The new rules were published in early 2014 by the Centers for Medicare & Medicaid Services (CMS), the federal agency responsible for administering the Medicaid program. The regulations outlined criteria for certain Home and Community-based Services (HCBS) programs operated under specific Medicaid waiver programs.

Medicaid HCBS programs provide a variety of services and supports that individuals with autism need to live in the community. These programs offer an alternative to institutional services for people with disabilities who need ongoing support to meet their functional needs. All states operate HCBS programs that serve individuals with developmental disabilities, like autism, but these programs vary widely from state to state in terms of eligibility requirements and available services. More information about Medicaid HCBS is available online.

What do the new rules mean?

The rules require all Medicaid HCBS programs to allow individuals to be able to choose their services and have access to the community. In particular, states are prohibited from using HCBS funding for settings that isolate individuals from the broader community. This is an important new protection that could help individuals with autism live in settings that are more integrated with the community.

However, in implementing this new requirement, each state Medicaid office has significant discretion in determining whether a given setting results in “isolation.” As a result of the rules, states are beginning to 1) identify the type of settings that may no longer be in compliance with the new rules, and 2) develop plans on how they will change their HCBS programs.

CMS developed these rules over a number of years, and Autism Speaks has long been involved in helping ensure that the needs of the autism community were represented in the development of these new standards. Now that the rules are final, states are beginning to implement the necessary changes to their programs including identifying the type of settings that may no longer be in compliance with the new rule, and to develop plans that outline any changes they will make to their HCBS programs as a result.

What is Autism Speaks doing and what can autism families do?

During this process, states are required to obtain input from advocates and Autism Speaks urges each state to seek and incorporate stakeholders' views on what constitutes isolating settings and how best to integrate individuals into the broader community. For more information on Autism Speaks' position on Housing and Residential supports, view our position statement here. Individuals with autism and their family know firsthand the barriers to true community integration and are the most appropriate individuals to help define isolating settings.

Not sure what to say?

It is important that the state hears directly from you about what you or your loved one with autism needs to live as independently as possible.CMS has published a set of exploratory questions that advocates can use to help them think about their experiences and create their message to state officials.

If you are in a waiver program already, use these questions to tell about your experience. For example:

  • What was your experience planning your waiver services? Were you able to choose the services you wanted and get them where and how often you wanted?
  • Does the place where you get your services reflect your needs and preferences? Did you have options to choose from?

If you are not yet receiving waiver services (because you are on a waitlist or otherwise) but expect to be using waiver services in the future, use these questions to talk about what services will be important to you in the future. For example:

  • Do you want to be able to work? If not, what type of meaningful non-work activities would you like to be involved in?
  • Would you like to have roommates or live on your own? How often would you like to have visitors? What types of supports are necessary for you to live as independently as possible?
Last updated : December 21, 2014 - 12:00:00
articles to display: 20 | 40 | 60 | all
<< Back to HOME Page