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October 31, 2014

Trial Of Marijuana-Based Drug Offers Hope - DisabiltyScoop
For children experiencing dozens or even hundreds of seizures a day, an experimental drug derived from marijuana could make all the difference.

Lawmakers Urge Feds To Listen To Autism Self-Advocates - DisabiltyScoop
Members of Congress are calling on the Obama administration to take into account the concerns of self-advocates as the federal government works to implement new autism legislation.

The Nursing Home Complaint Center Urges Family Members of a Victim of Sepsis That Developed in a Nursing Home Anywhere in Texas to Call the Law Firm of Hotze Runkle - PRNewswire

WASHINGTON, Oct. 31, 2014 /PRNewswire/ -- The Nursing Home Complaint Center is urging the family members of a loved one who developed sepsis in a nursing home anywhere in the state of Texas to immediately call the Hotze Runkle law firm in Austin at 877-919-0830 for their unsurpassed...



Cientos de niños de Afganistán reciben audífonos gratis - PRNewswire

-- La Bayat Foundation y Starkey Hearing Foundation se asocian para proporcionar el regalo de la audición a regiones en conflicto en Afganistán. KABUL, Afganistán, 31 de octubre de 2014 /PRNewswire/ -- La semana pasada la Bayat Foundation lanzó una asociación...



CHOP Career Path Program Receives Access Achievement Award from Mayor's Commission on People with Disabilities - PRNewswire

PHILADELPHIA, Oct. 31, 2014 /PRNewswire-USNewswire/ -- The Children's Hospital of Philadelphia's (CHOP) Career Path program today received the Access Achievement Award from the Mayor's Commission of People with Disabilities (MCPD). The award is given to businesses, organizations and...



Centenas de crianças no Afeganistão recebem gratuitamente aparelhos auditivos - PRNewswire

CABUL, Afeganistão, 30 de outubro de 2014 /PRNewswire/ -- Na semana passada, a Fundação Bayat iniciou uma parceria com a Fundação da Audição Starkey para fornecer tratamento a pessoas com deficiência auditiva no Afeganistão. Durante a primeira...



Cientos de niños en Afganistán reciben audífonos gratis - PRNewswire

KABUL, Afganistán, 30 de octubre de 2014 /PRNewswire/ -- La semana pasada Bayat Foundation inició una colaboración con Starkey Hearing Foundation para brindar atención auditiva a personas necesitadas de Afganistán. Durante la primera misión auditiva en el...



Des centaines d'enfants afghans bénéficient d'aides auditives gratuites - PRNewswire

- La Fondation Bayat et la Fondation Starkey Hearing unissent leurs forces pour faire don de l'ouïe dans les régions ravagées par des conflits de l'Afghanistan. KABOUL, Afghanistan, 31 octobre 2014 /PRNewswire/ -- La semaine dernière, la Fondation Bayat a...



Hunderte Kinder in Afghanistan erhalten kostenfreie Hörgeräte - PRNewswire

- Die Bayat Foundation und die Starkey Hearing Foundation arbeiten zusammen, um das Geschenk des Hörens in afghanische Konfliktregionen zu bringen. KABUL, Afghanistan, 31. Oktober 2014 /PRNewswire/ -- Letzte Woche hat die Bayat Foundation eine Partnerschaft mit der Starkey...


October 30, 2014

Delta Gives Back to Veterans, Service Members and their Families with Matching SkyMiles Offer - PRNewswire

ATLANTA, Oct. 30, 2014 /PRNewswire/ -- Delta Air Lines (NYSE: DAL) is helping veterans and members of the military and their families by matching miles donated by customers in November to the Fisher House Foundation and Luke's Wings charitable organizations. Delta will match donations...



Goodwill® Launches Social Enterprise In Finland To Serve People With Disabilities - PRNewswire

ROCKVILLE, Md., Oct. 30, 2014 /PRNewswire-USNewswire/ -- Goodwill Industries International today announced its partnership with the SOTEK Foundation to launch its fourteenth international social enterprise, which expands Goodwill's presence to Finland. Established in 2004, SOTEK provides...



Hundreds Of Children In Afghanistan Receive Free Hearing Aids - PRNewswire

KABUL, Afghanistan, Oct. 30, 2014 /PRNewswire-USNewswire/ -- Last week the Bayat Foundation kicked off a partnership with Starkey Hearing Foundation to provide hearing health care to people in need across Afghanistan. During the first hearing mission in the country, the two organizations...



Blueprint Highlighting Employment Reforms for People with Disabilities Released - PRNewswire

CHICAGO, Oct. 30, 2014 /PRNewswire-USNewswire/ -- Today, Equip for Equality released a Blueprint for the implementation of the Illinois Employment First Act.  A Forum discussing the Blueprint and its recommendations to maximize employment opportunities for people with disabilities in...



More Than 100 Genes Tied To Autism - DisabiltyScoop
Scientists say they've identified scores of genes linked to autism, offering a greater understanding of the roots of the developmental disorder that could lead to better treatments.

Idaho Finds 'Gaps' In Medicaid Waivers, Seeks Public Input - Autism Speaks - Advocasy

Review finds need for improvement in access to services

October 29, 2014

Idahohas found itsMedicaid waiver program for Home- and Community-Based Services comes up short in complyingwithnew federal guidelinesand is inviting public reaction. The state Department of Health and Welfare examined Idaho's 352 residential assisted living facilities and 2,212 certified family homes and found gaps in their compliance with the new federal rules which prohibit services that "isolate" residents from the general community or fail to provide the same level of access.

Individuals with autism and their caregivers who receive or want Medicaid waiver funding can comment on the review through November 2. Feedback can be submitted by:

E-mail:
HCBSSettings@dhw.idaho.gov

Written comments sent to:
HCBS
Division of Medicaid, Attn. Transition Plan
PO Box 83720
Boise, ID 83720-0009

FAX:
(208) 332-7286 (please include: Attention HCBS)

Calling toll free to leave a voicemail message:
1 (855) 249-5024

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.Idaho has reviewedhow its Medicaid program complies 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?

Idahois 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. (These rules do not apply to intermediate care facility or other Medicaid services – these rules apply only to Medicaid HCBS programs, including HCBS waivers.)

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?
October 29, 2014

Pentagon Delays Proposed Rate Cuts For ABA - Autism Speaks - Advocasy

New program would have cut ABA provider rates in half

October 09, 2014

WASHINGTON, DC (October 9, 2014) --The Department of Defense has announced it will delay a planned cut in what it pays providers through TRICARE to deliver applied behavior analysis (ABA) treatment to military kids with autism.

The new demonstration program allows coverage of BCBA/BCBA-D direct services and the tiered-service delivery model, which includes BCaBAs and Behavior Technicians, by consolidating existing programs under one uniform benefit for all TRICARE beneficiaries with autism.

The cut in reimbursement was among a series of changes included in TRICARE's new consolidated ABA benefit for beneficiaries that is scheduled to take effect October 20.

In a statement, a Department of Defense spokesperson confirmed thatTRICARE will delay any ABA reimbursement rate changes until April 20, 2015.

"The Department understands the concerns caused by the rate change," the DoD said. "In order to address these concerns, the Department has commissioned an independent review of the Demonstration."

Autism Speaks responded to the announcement as a positive sign.

"We are encouraged to see the DoD respond to the concerns of families and providers and look forward to working with the Department to ensure the final policies meet the needs of families, align with best practices, and provides for timely and affordable services," said Karen Driscoll, Autism Speaks' associate director for federal government affairs & military relations.


CT Launches Post-Newtown Overhaul Of Behavioral Health Care - Autism Speaks - Advocasy

Autism-specific steps included in plan announced by Governor

October 10, 2014

(October 10, 2014) -- Connecticut Gov. Dannel Malloy has announced a comprensive overhaul of the state's emergency and lonterm behavioral health care system, includingfour steps specific to upgrading treatment for children with autism. The reforms were required by legislation enacted after the 2012 mass shooting tragedy inNewtown.

“No child in mental health crisis should have to wait days to get access to the treatment they need," Malloy said. "That is why I am announcing a series of strategies that...can be implemented immediately."

The Connecticut plan calls for short-term improvements toemergency care services which, in line with national trends, have experienced increasing admissions of youths with acute behavioral health issues and delays in discharges. Malloy's plan calls for immediate increases in emergencycare capacity with specific accommodations for the autism community.

The longer term changes were developed bythe state Department of Children and Families (DCF) as required under Public Act 13-178, legislation enacted following the Newtown tragedy.

In a review of emergency care services required by children in HUSKY, the state's Medicaid program, nearly half the children with autism enrolled in the programneededto visit anemergency roomover an 18-month period. Nearly half of those visits were because of behavioral, rather than medical, reasons, versus just 7 percent for the overall HUSKY population.

In response, four steps were outlined specific to the autism community:

  • Connecticut will implement the federal government's July 7 directive to provide medically necessary treatment through its Medicaid program forchildren with autism up to age 21. An outline of services is expected October 22.
  • The state will invest up to $1 million to create up tothreeteams of specially trained practitioners to address the unique needs of children with autismreceiving care in Psychiatric Residential Treatment Facilities and other settings to recommend a successful out-placement.The transition plans may includeevidence-based interventionscovered byprivate insurance or Medicaid,work with children in hospitals orin their homes who are at risk for hospitalization.
  • An in-home care program will be created todivert children with autism aged13-21from inpatient and other residential settings.A $300,000 pilot program will serve 10 children with severely challenging behaviors. "This in-home support pilot will assist adolescents who have autism and who are exhibiting severely challenging behaviors to remain in the community and live successfully at home with their families."
  • Threespecialized inpatient hospital beds will be providedfor individuals experiencing the most acute and complex autismand co-occurring psychiatric disorders. A small number ofindividualsrequire hospitalization because of intense behavior challenges, but Connecticut has been ill-equipped to handle them.

DCF estimates that 156,000Connecticut children may have behavioral health symptoms that would benefit from treatment.

"Families experience a number of barriers to treatment including a highly fragmented system in which access varies according to such factors as insurance status, involvement in child welfare or juvenile justice, race and ethnicity, language, and geographic location," the Department concluded. "In addition, the array of services lacks sufficient inclusion of supports for all children and families that promote nurturing relationships and environments that foster social, emotional, and behavioral wellness. A comprehensive plan is required to guide the efforts of multiple stakeholders in developing a children's behavioral health system that builds on existing strengths and addresses the many challenges that exist."

The Governor's immediate action plan is HERE.

The DCF longterm plan is HERE.


JOIN UCP IN CELEBRATING WORLD CEREBRAL PALSY DAY - UPC
FOR IMMEDIATE RELEASE CONTACT: Kaelan Richards: 202-973-7175, krichards@ucp.org JOIN UCP IN CELEBRATING WORLD CEREBRAL PALSY DAY  Share your ideas and help to change the world for people with cerebral palsy and other disabilities Washington, D.C. (October 2, 2013) – Do you …
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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 …
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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 …
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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           …
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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, …
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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 …
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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) …
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Join the Conversation: I'm In To Hire Day - AUCD
I'M IN TO HIRE is purposed to promote the business benefits for hiring people living with intellectual and developmental disabilities* (IDD) and motivate employers across the globe to create a more inclusive workplace. Show your support by resharing any post from @ImInToHire. Thank you for supporting our campaign and weighing in on social media.

AUCD 2014: New Plenary Speakers Confirmed - AUCD
AUCD is pleased to welcome several amazing plenary speakers to our 2014 Conference! Don't miss out on these engaging speakers, register today!

AUCD Welcomes Shannon Haworth as the new senior specialist for the LEND team at AUCD - AUCD
Shannon Haworth most recently worked for the Partnership for People with Disabilities as the Project Manager for the Virginia state autism implementation grant. She is a former Virginia LEND (Leadership Education in Neurodevelopmental Disabilities) trainee.

AUCD 2014: Dont Miss Out on Early Bird Registration - AUCD
Register by October 10th and be entered to win a free conference main registration fee! Two winners will be randomly drawn and notified on October 11th. Reserve your space today for the highly anticipated AUCD Conference.

AUCD 2014 Hotel Room Block is Full! - AUCD
AUCD's block of hotel rooms at the Renaissance is full and they are not able to give us more rooms at our negotiated group rate. Please go to the Hotel link to see a list of hotels within walking distance to the Renaissance that might have space.

2014 Trainee Travel Scholarships - AUCD
AUCD is pleased to announce the availability of 16 travel scholarships of up to $500 each AND 4 volunteer scholarships of up to $500 each to support AUCD Trainees in attending the 2014 AUCD Conference.

AUCD Welcomes Leon Barnett as Program Specialist for the OSEP Promise TA Center - AUCD
Leon Barnett previously served at George Mason University as a teacher and counselor for The Mason Life Program (a post-secondary program for young adults with intellectual and developmental disabilities) as well as a special education teacher in Baltimore City, Maryland. He received his Master's degree in Leadership for School, Family, and Community Collaboration from The Johns Hopkins University.

AUCD Welcomes Jessica Finkel as Program Assistant - AUCD
Jessica Finkel is formerly with the Osteogenesis Imperfecta Foundation in program and development work. She is currently working on her Master's degree in Public Policy with a concentration in Nonprofit Management and Leadership at the University of Maryland, College Park.

Special Issue of Medical Care Highlights Health Disparities at the Intersection of Disability, Race and Ethnicity - AUCD
It's well established that Americans with disabilities and those in underserved racial/ethnic groups face significant disparities in access to health care. Now, researchers are beginning to examine the unique patterns of health care inequalities experienced by racially and ethnically diverse patients with disabilities, according to a special October supplement to Medical Care. The journal is published by Lippincott Williams & Wilkins, a part of Wolters Kluwer Health.

AUCD Statement on today's Senate Hearing on Overcoming Barriers to Economic Self-Sufficiency for People with Disabilities - AUCD
WASHINGTON, DC (September 18, 2014) - The Association of University Centers on Disabilities (AUCD) applauds Chairman Tom Harkin (D-IA), Ranking Member Lamar Alexander (R-TN), and other Senate HELP Committee Members for holding a hearing today on overcoming persistent barriers to economic self-sufficiency for people with disabilities.

President's Committee for People with Intellectual Disabilities Holds 2014 Meeting - AUCD
The President's Committee for People with Intellectual Disabilities held their 2014 meeting September 3-5. The committee how has significantly more members with intellectual disabilities and strong representation from the AUCD network.

Happy Preparedness Month! - AUCD
Celebrate by ensuring you and your family are prepared for an emergency. CDC has focused on children's preparedness for the past week. Learn some of the ways children's needs are unique in an emergency and how your family can prepare.

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 …
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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 …
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AUCD 2014: Which concurrent session will you be attending? - AUCD
You will have a hard time choosing which concurrent session to attend because they are all pretty fantastic. AUCD2014 features nearly 50 concurrents in over 25 hot topics including advocacy, clinical service, postsecondary education, employment, self-determination, and leadership!

For Many With Disabilities, Special Education Leads To Jail - DisabiltyScoop
Far too often, students with disabilities end up on a path to prison when their behavioral and emotional issues are not well addressed at school, experts say.

Special Olympics and Nielsen Announce Strategic Alliance - PRNewswire

WASHINGTON, Oct. 29, 2014 /PRNewswire-USNewswire/ -- Special Olympics today announced a strategic alliance with Nielsen to uncover and illustrate the purchasing power of people with intellectual disabilities (ID). As part of the strategic alliance, Nielsen will help measure and...



Hamilton Relay Awarded Captioned Telephone Service Agreement for the District of Columbia - PRNewswire

AURORA, Neb., Oct. 29, 2014 /PRNewswire/ -- Through a competitive procurement process, the District of Columbia has selected Hamilton Relay as their new provider of Captioned Telephone Relay Service (CTRS). Hamilton Relay, a leading provider of Telecommunications Relay and Captioned...



Identify Academic Strengths and Weaknesses with the Academic Achievement Battery™ (AAB™) Screening Form from PAR - PRNewswire

LUTZ, Fla., Oct. 29, 2014 /PRNewswire/ -- PAR is proud to announce the release of the Academic Achievement Battery™ (AAB™) Screening Form by Melissa A. Messer, MHS. Ideal for measuring basic academic skills, the AAB Screening Form can be used in educational, research, or...



Support Urged For Families Weighing Out-Of-Home Placements - DisabiltyScoop
While the vast majority of kids with developmental disabilities are cared for at home, pediatricians are being reminded that out-of-home placements remain an important option.

Course Focuses On Interior Design For Those On The Spectrum - DisabiltyScoop
An interior design course at one college is teaching students to make homes functional, practical, safe and aesthetically pleasing for people with autism and their families.
October 28, 2014

Mobility Ventures Recognized by National Automobile Dealers Association - PRNewswire
SOUTH BEND, Ind., Oct. 28, 2014 /PRNewswire/ -- Mobility Ventures LLC, designer and manufacturer of the acclaimed MV-1, the only American vehicle purpose-built and designed from the ground up in support of people who use wheelchairs, is honored to announce being named the first ever...

Silent Auction Of Paralympics Memorabilia To Support Rehabilitation Research - PRNewswire

ROSEMONT, Ill., Oct. 28, 2014 /PRNewswire-USNewswire/ -- Remember the brightly colored jackets the Olympians wore in Sochi last winter?  Would you like to get your hands on one?  Or perhaps a gym bag with the Paralympics logo?  A watch from the Beijing Olympics?  These...



Teen With Disability Found Locked In Cage - DisabiltyScoop
Two adults were arrested after a 19-year-old man with a disability was found trapped in a cage that was chained shut.

Maryland Overhauling Community Pathways Medicaid Waiver Plan - Autism Speaks - Advocasy

Response to federal directive prohibiting settings that 'isolate' individuals with disabilities

October 28, 2014

Maryland is surveying the disability community as part of an overhaul of Community Pathways, its Medicaid waiver program for Home- and Community-Based Services, in order to comply with a federal directive that prohibits services that "isolate" participants from the general community.The new rules will affect group homes and "alternative living units,"as well as home-based services for children and adults.

Seperate surveys have been set up for individuals with autism and their caregivers, residential providers, and case managers and support planners. Survey responses are due Friday, October 31.

To take the survey, go to:

Participants/Caregivers, or
Case Managers/Support Planners, or
Residential Providers

The Department of Health and Mental Hygiene (DHMH) expects to draft a plan by early January then conduct town hall meetings and a 30-day public comment period.The plan will then be revised in response to public feedback and submitted to the federal Centers for Medicare & Medicaid Services (CMS) in March.

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 Community Pathways. Maryland will proposerevisions to the waiver programto 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?

Maryland isrequired to seek public input. This is your opportunity as an individual with autism or a caregiver, residential provider or case managerto affect how these changes take place.

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. In an attempt to simplify the process, maryland created the three surveys. In addition,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?

California Proposes Changes To Medicaid Waiver Program - Autism Speaks - Advocasy

Group homes, other facilities can no longer 'isolate' developmentally disabled from society

October 27, 2014

October 27, 2014 -- Californiahas proposed changingits Medicaid waiver program for Home- and Community-Based Services in order to complywith afederal 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.

Individuals with autism and their caregivers who receive or want Medicaid waiver funding can comment on the new proposal, which was developed by the California Department of Health Care Services,through November 26. Feedback can be submitted by email to STP@dhcs.ca.gov.

  • A stakeholder call is scheduled for December 2 from0am – 12pm. The call-in number is: 888-829-8671; Participant passcode: 7335142
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 Medi-Cal.California has proposed revisingMedi-Cal 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?

Californiais 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?
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Autism Speaks Reports On Efforts To Improve New TRICARE Plan - Autism Speaks - Advocasy

Attempt to revise Autism Demonstration Program

October 24, 2014

WASHINGTON, DC (October 24, 2014) --Autism Speaks, military families and other service and advocacy organizations met last week with TRICARE and Department of Defense (DoD) representatives to address questions and concerns regarding coverage of Applied Behavior Analysis (ABA) under TRICARE's new Autism Care Demonstration (ACD).A copy of TRICARE meeting handouts is included HERE.

The following summary of the TRICARE meeting is to help inform the community of issues discussed.Confirmation with your regional contractor is strongly recommended before making any decisions affecting your operations or a beneficiary's treatment plan.If you are not receiving a timely or complete response to your policy questions from the regional contractor, please email us at Militaryfamilies@autismspeaks.org.

  • Reimbursement rate cuts to services delivered by a Board Certified Behavior Analyst (BCBA) and Board Certified Assistant Behavior Analysts (BCaBA) have been put on hold for 180 days. The DoD has contracted with the RAND Corporation to conduct an independent study to assess ABA reimbursement rates.The Contractor shall continue to process claims at the prior reimbursement rates of $125 for services delivered by a BCBA and $75 for one-on-one ABA delivered by a BCaBA.A copy of TRICARE's letter to the regional contractors can be found HERE.
  • TRICARE confirmed that BCBA delivered services can be combined with the tiered service delivery model provided one BCBA is designated for treatment plan oversight. We requested this be clarified in policy to ensure consistent implementation across the three regions.
  • The issue of one BCBA per case was raised, and TRICARE representatives confirmed that this meant that one BCBA must be responsible for care coordination and oversight of the patient's treatment plan.TRICARE further explained that this was “a billing issue” and “the ACD does not limit a team approach to ABA or preclude consultation with or assistance by other BCBAs.”We requested this be clarified in policy to ensure consistent implementation across the three regions.
  • BCaBAs may perform supervision duties, but must also work under the supervision of a BCBA.When asked how BCaBA supervision services were to be billed, TRICARE explained that the BCaBA supervision must be billed by the BCBA.We requested this be clarified in policy to ensure consistent implementation across the three regions.
  • Concern was raised that the new Registered Behavior Technician (RBT) certification requirement may result in treatment delays.A one-year delay of this requirement was proposed by attendees.TRICARE agreed to re-examine its RBT timeline and the additional requirements it places on technicians over and above the RBT requirements.
  • There was discussion regarding the discharge criteria and the two-year clinical review included in the ACD policies; concerns were raised that other outpatient services do not have discharge criteria mandated in policy.The disparity between TRICARE's discharge criteria and the BACB guidelines was also discussed.TRICARE assured attendees that this language was not intended to discharge patients from care and that such decisions should be made at the clinician level with patients and parents.TRICARE agreed to reconsider the discharge language and the necessity of a two-year clinical review.
  • Concerns about the minimum age eligibility of 18 months were raised.TRICARE agreed to re-examine this requirement.
  • TRICARE confirmed that the monthly five percent supervision rule applied to time the behavior technician spends with each ABA recipient.
  • There was discussion emphasizing the importance of ensuring referring physicians receive a copy of the ABA treatment plan and progress report each six months.
  • There was discussion about expanding the pool of ABA providers to include licensed clinical psychologists as long as ABA was in the scope of their practice.TRICARE agreed to reconsider including licensed clinical psychologists as authorized ABA providers.
  • Concerns were raised that not all cost shares under the ACD accrue to the family catastrophic cap, resulting in significant out-of-pocket costs for non-active duty family members and effectively barring access to recommended treatment services. TRICARE and DoD personnel agreed to re-examine the ACD cost shares and catastrophic cap concerns, but it was unclear what the timetable for that would be.
  • Because of time, the group was not able to discuss concerns regarding limitations on treatment domains, but the handouts TRICARE provided for the meeting include assurances that, "The ACD interprets the medically identified ASD treatment domains as behavior, communication, and social skills broadly to include the array of targets identified by the BCBA during the development of the ABA treatment plan.The ACD does not limit ABA treatment plan targets developed by the BCBA but rather leaves treatment plan targets to the professional judgment of the BCBAThe change in terminology is intended to map care and treatment to medically defined requirements – not to limit the scope of care that can be provided.”
  • Autism Speaks will continue to work for positive policy improvements to ensure all beneficiaries with autism have access to affordable and timely services in a manner consistent with best practices. As policy develops, we will work to keep the community informed.

    Last updated : November 1, 2014 - 02:50:29
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