A GPS for Families of People with Special Needs – Part IV



I wrote this manual to help other families of individuals with special needs and the professionals who work with them. My daughter now has five life-threatening conditions, and autism just to keep things interesting. We have been through everything from early intervention to currently going through transition to adult care. I hope this helps you on your journey. Part IV follows; to review Parts I – III, see the September through November issues of EP magazine.


Hearing, dental, and vision care (also see section on Vision) are an important component of overall health for growing children. Unfortunately, sometimes hearing issues aren’t discovered quickly and can even be  misinterpreted as behavioral, affecting speech and academic development. Newborn screening, including hearing screening, helps with early diagnosis. NJ has the Early Hearing Detection & Intervention program and information for families is at www.state.nj.us/health/fhs/ehdi/parentinfo.shtml. In the event that hearing loss is confirmed, the U.S. Department of Education as an excellent publication “Opening Doors: Technology and Communication Options for Children with Hearing Loss” at www2.ed.gov/about/offices/list/osers/products/opening_doors/index.html or Spanish www2.ed.gov/about/offices/list/osers/products/opening_doors/espanol.html. There is also “Just in Time: Hearing-Related Resources for Families” at www.infanthearing.org/familysupport/just-in-time-color.pdf. Parents can decide what works best for their child using technology such as cochlear implants, sign language, lip-reading etc. Much like those with learning disabilities see LD as a “learning difference” (i.e., the student can still learn although differently), the deaf community views deafness as a difference rather than a disability. Early diagnosis and treatment will result in the best outcomes such as speech and facilitate inclusion in the community.


Families of individuals with disabilities may need to be prepared for hospital stays, either through planned procedures or through the emergency room. Families who have a member with life-threatening illness should be trained in First Aid/CPR and emergency medication administration, sometimes known as “rescue meds” and to have them wherever the individual goes. Families need to know how to care for the individual upon discharge from the hospital, when to call the doctor, and how to tell if it’s an emergency that requires a call to 911. Family members may also need to monitor the individual at night, even while asleep, and there are video/audio monitors as well as motion detectors that are sensitive enough to hear breathing. Please also see the section Emergencies-Emergency Care for more information. There is information on preparing for a hospital stay, even if it is unplanned, such as having some items pre-packed and lists to organize what is needed, at www.spannj.org/familywrap/SPAN-hospital_visit_factsheet-revised.pdf.

There are also resources for when your child is already in the hospital from the Caregiver Action Network (“When Your Loved One Is Hospitalized”) at http://caregiveraction.org/_doc/pdf/WhenHospitalized.pdf.

Guidelines for a Hospital Stay from the National Transition of Care Coalition are found at www.ntocc.org/portals /0/hospital_guide.pdf. There is also information on the transition “Hospital to Home” from Families Together at http://familiestogetherinc.org/wp-content/uploads/2011/07/Hosptial_to_Home_Final_July_2011.pdf or Spanish http://familiestogetherinc.org/wp-content/uploads/2011/07/Hospital-to-Home-Spanish-1.pdf as well as “Surviving a Hospital Stay… and After” at www.spannj.org/familywrap/SPAN-hospital_stay-preparing_to_go_home-revised.pdf.


Parents of children with life-threatening illness need even more support (please also see the sections on  Hospitalization and Emergencies). Families will need to be trained in CPR and First Aid. They also need to know  when to call 911. Parents can find CPR and First Aid classes from the American Heart Association at www.heart.org/HEARTORG/CPRAndECC/FindaCourse/Find-a-Course_UCM_303220_SubHomePage.jsp. They can also find classes from the American Red Cross at www.redcross.org/take-a-class or Spanish http://www.redcross.org/cruz-roja/cursos. Families can also check with hospitals, fitness/wellness centers, county colleges, and evening adult classes. There is another organization called Chai Lifeline whose motto is “Fighting Illness with Love.” Their resources include housing and meal support (kosher, too) for the entire family during hospitalization and can be found at www.chailifeline.org. Lastly information on end-of-life care, called hospice
care, can be found from WebMD at www.webmd.com/balance/tc/hospicecare-topic-overview as well as the National Hospice and Palliative Care Organization at www.nhpco.org/about/hospice-care


Managed care is intended to be a system of health care delivery and financing which coordinates and provides timely access to high-quality, medically-necessary health care services for its members in a cost-effective manner. When it works well, managed care can provide a comprehensive approach to providing and paying for quality medically needed services through either public or private insurance. According to the Boggs Center, the “Hallmarks of Managed Care” are:
1. Using specific providers (in the insurance company network)
2. Not relying on the emergency room for primary care services
3. Authorizing of specialty care and referrals (a primary care physician such as a pediatrician or family practitioner would do this)

A very important component of managed care is care management. This is mandated by NJ Medicaid for all children with special health care needs and also available in most private insurance plans. In Medicaid, the HMO will assign the child to a care manager. Under NJ Medicaid the care manager is usually a nurse or social worker who is responsible to help coordinate the child’s care and is the first person to contact with a question or concern about the child’s health coverage. Families should request a care manager if they are not automatically assigned one.

Another important piece of managed care is for families to use emergency rooms only for emergencies. Families can use the “prudent layperson” definition, which means if they as a non-medical layperson think that the individual needs emergency care, then they can go to the E.R. Other resources include:

Your guide for Making Managed Care Work for You – auCd

parents partnering with Managed Care plans – Family voices national

Medicaid Managed Care supplement (hard copy only) – Community health law project

to Your health (hard copy only) – Community health law project nJCommunity health law project


Medicaid is a joint federal-state program which pays for health care services for low income families with dependent children, senior citizens, and people with disabilities, as well as some people who are medically needy because their health expenses are high. Most of Medicaid in NJ is now Medicaid managed care (see section on Managed Care). The Boggs Center’s “Your Guide for Making Medicaid Managed Care Work for You” can be found at http://rwjms.rutgers.edu/boggscenter/products/documents/MedicaidManagedCareEnglishfinal2011.pdf
or http://rwjms.rutgers.edu/boggscenter/products/documents/Medicaidmanagedcarespanishfinal2011.pdf.

An important part of Medicaid for children is EPSDT (Early Periodic Screening Diagnosis & Treatment) http://mchb.hrsa.gov/epsdt/overview.html. The Maternal and Child Health Bureau defines it as:
Early Identifying problems early, starting at birth
Periodic Checking children’s health at periodic, age-appropriate intervals
Screening Doing physical, mental, developmental, dental, hearing, vision, and other screening tests to detect potential problems
Diagnosis Performing diagnostic tests to follow up when a risk is identified, and
Treatment Treating the problems found.

Despite the stigma sometimes associated with Medicaid, EPSDT has better coverage for children than most employer health plans.

In NJ, Medicaid and SCHIP (State Children’s Health Insurance Program) are together. Information on  Medicaid/SCHIP can be found under the Family Care Program. Various resources for New Jersey Family Care include:

NJ FamilyCare factsheet- who is eligible/what is covered (bilingual)

healthy Facts at a glance
http://www.njfamilycare.org/docs/healthy_facts_english.pdf or Spanish

important news: Will using Benefits hurt my Changes of getting a green Card or Becoming a u.s. Citizen?
http://www.njfamilycare.org/docs/flyer_english.pdf or Spanish

General information on Medicaid and how it works can be found at www.spannj.org/familywrap/medicaid_fact_sheets.htm or Spanish www.spannj.org/publications/index.html#espanol. The Arc of NJ also has regular Medicaid updates on their program Mainstreaming Medical Care at www.arcnj.org/programs/mainstreaming_medical.html as well as their excellent newsletter Healthy Times at www.arcnj.org/information/publications.html/title/healthy-times-

Some families have had difficulties with the “Disabled Adult Child (DAC)” provision affecting Medicaid eligibility. This means that if the child had SSI before but the parent becomes disabled, retires, or dies, the child is a DAC and should maintain Medicaid eligibility. There are two good publications available from the NJ Department of Human Services on this topic at www.state.nj.us/humanservices/ddd/documents/Documents%20for%20Web/DisabledAdultChildren(DAC).pdf and www.state.nj.us/humanservices/dmahs/info/resources/medicaid/2013/13-03_Continued_Eligiblity_For_Disabled_Adult_Children_DAC.pdf.

Families can ask questions about their Medicaid benefits from their HMO member services or care manager. NJ also as a Medicaid hotline at (800) 356-1561. If families still have concerns, they can contact Medical Assistance Customer Centers in their county found at www.state.nj.us/humanservices/dmahs/info/resources/macc/ The Kaiser Family Foundation has “A Guide to the Medicaid Appeals Process” at  http://kaiserfamilyfoundation.files.wordpress.com/2013/01/8287.pdf. If families haven’t been able to resolve the issue using this process, they can fill out the Medicaid problem reporting form found at www.spannj.org/medicalproblemreportingform.htm. The last resort is a Medicaid fair hearing and there is a guide explaining the process from Family Connection, which, although not NJ specific, gives tips on how to prepare at http://pandasc.org/wp-content/uploads/2012/01/Medicaid-Fair-Hearing.pdf

New developments in NJ Medicaid include the Comprehensive Medicaid Waiver and information is available on forthcoming changes at www.state.nj.us/humanservices/dmahs/home/waiver.html. Please note that effective 7/1/14, all Medicaid waivers transitioned to Medicaid Managed Long Term Services and Supports found at www.state.nj.us/humanservices/dmahs/home/mltss.html. See also SPAN’s factsheet at  www.spanadvocacy.org/content/nj-medicaid-waivers-transition-managed-care-effective-7114.


In some circumstances, individuals with special health care needs may also be eligible for Medicare, such as for dialysis or kidney transplant. When some children with disabilities become adults, they may become dually eligible for both Medicaid and Medicare. The Social Security Administration has a booklet “Benefits for Children with Disabilities” www.ssa.gov/pubs/index.html. A good resource for families who have questions on Medicare is the State Health Insurance Program counselors at www.state.nj.us/humanservices/doas/home/sashipsite.html.


One of the main causes of treatment failure resulting in hospitalization for both physical and mental health is medication error. Families may be told to increase or reduce the dosage of a medication they already have on-hand, or to use a pill splitter. This may cause confusion because it is different from what was on the bottle. Or the next time they pick up the medication, it might look different because it is a generic instead of a brand name version. Each time they get a new medication, families should ask if it will have a bad reaction when taken with any of the individual’s current medications. Families may even need to get medications from a specialty pharmacy – sometimes called compounding pharmacy because a special mixture is needed to create the medicine – though sometimes the hospital can give the formula directly to a local pharmacy. Other times families may encounter issues if they are getting care across state lines. In this case, even if they have an out-of-state authorization for medical care, they may need to pay for medications up front and get reimbursed when they get home. Or they may have to get a prescription or approval for use of home medication while in-patient if the family member is hospitalized and the hospital doesn’t carry the medication in their “formulary” (list of drugs), though some hospitals have pharmacies like CVS on the same campus in addition to their “in-house” pharmacy.

Organizing medicine will help avoid giving the wrong dose or at the wrong time or missing a dose. A good free tool is MyMedSchedule at www.mymedschedule.com which has a medication schedule, what each one looks like, its use, and a checklist for filling the pill box. FDA has a form called My Medicine Record at www.fda.gov/downloads/AboutFDA/ReportsManualsForms/Forms/UCM095018.pdf. Family Voices/ Family-to-Family New Hampshire has a publication “Medical Prescription Tips” at www.fv-ncfpp.org/files/5813/0593/6859/Prescip_Tips.pdf. Please also see the diagram below on how to read a prescription bottle label.

The challenge of paying for medications sometimes causes families to either skip doses or even take a medicine from another family member, which can cause even more health problems. The first thing families can do is make sure their insurance covers what it should and that both prescription plans are billed (if there is more than one plan). There are organizations that help pay for medicine, especially for those without insurance. The Partnership for Prescription Assistance will help families get free or low cost medicine and information is available at www.pparx.org/en/prescription_assistance_programs or Spanish www.pparx.org/es/prescription_assistance_programs_es. Pfizer Pathways has a similar program and does not limit families to only use Pfizerbrand prescriptions. The program can be found at http://www.pfizerrxpathways. com/en/?step=1 or Spanish http://www.pfizerrxpathways.com/es/?step=1.


According to the Social Security Administration (SSA), “Supplemental Security Income (SSI) program pays benefits to disabled adults and children who have limited income and resources.” The SSA has a booklet on this and other benefits at http://www.ssa.gov/pubs/index.html in English/Spanish (see Benefits for Children with Disabilities.) It is important to note that if the child isn’t eligible for SSI due to family income, at age 18 s/he can reapply as a “family of one.” In many states, SSI and Medicaid (see also Medicaid section) are linked. Social Security Disability Insurance (SSDI) SSDI “pays benefits to you and certain members of your family if you are ‘insured,’ meaning that you worked long enough and paid Social Security taxes.” Children may get benefits if their parent becomes disabled. Young adults with disabilities who have worked may be eligible for benefits under their own record. For more information see http://www.ssa.gov/dibplan/index.htm or SPAN’s Healthcare Financing Fact Sheet series at www.spanadvocacy.org/content/health-care-financing-factsheets-english and www.spanadvocacy.org/content/healthcare-financing-factsheets-spanish.


According to the Maternal & Child Health Bureau, Title V is a “Federal-State partnership” that “acknowledges the uniqueness of each State and… maternal and child health program and the differing needs of their individual populations.” NJ has county “case management units” that provide families of children 0-21 find health resources and discounted medical supplies, as well as assist with early intervention, Medicaid, SSI, and the Catastrophic Illness Relief Program application, including home modification (see section on Financial Help.) They link families to charitable organizations that do fund raisers for items like medical equipment (leg braces, wheelchairs, etc.). Families can find help in their county at http://www.state.nj.us/health/fhs/sch/sccase.shtml. Family Voices national has a booklet for families at http://www.familyvoices.org/work/title_v under “Title V Information System.” In NJ, Special Child Health Services county case management units are found at http://www.state.nj.us/health/fhs/sch/sccase.shtml.


Transition to adult life for children with special needs is more than “school to work.” A big part of the transition is changing to adult healthcare. A core Maternal & Child Health Bureau outcome is “Youth with special health care needs receive the services necessary to make transitions to all aspects of adult life, including adult health care, work, and independence.” But transition to adult life needs to start when children are young and be reinforced throughout their lives. This can be done by beginning to give the child choices and some control, even for something as simple as what to wear on a daily basis. When the child has limited choice – for example, medical procedures like lab work –the child can choose something simple, like which arm to use. Children need to learn to advocate for themselves to maximize their independence. Families should try not to do everything for their child with special needs, but also recognize the child may need more time to do things themselves. Even if the child may not be completely independent as an adult, families can help ensure that their child can reach their personal best potential, whatever that may be. Resources to help with health care transition include:


Being a healthy adult: how to advocate for Your health and health Care- Boggs Center
http://rwjms.rutgers.edu/boggscenter/products/documents/TransitiontoAdultHealthcare-ENcomplete.pdf or Spanish http://rwjms.rutgers.edu/boggscenter/products/documents/TransitiontoAdultHealthcare-SP-complete.pdf

going from tween 2 teen: it’s time to Be More in Charge of Your health (ages 12-14)

Your life, Your health, Your Way: it’s time to Be More in Charge of Your health (ages 15-17)

Your Future, Your life (young adults)

planning for a healthy transition: a Family transition plan – Washington department of health

transition Resources: health -kentucky Cabinet for health & Family services
Ages 12-14 http://chfs.ky.gov/ccshcn/transition12-14.htm
Ages 15-17 http://chfs.ky.gov/ccshcn/transition15-17.htm
Ages 18-21 http://chfs.ky.gov/ccshcn/transition18-21.htm

FOR YOUTH: transition to adult life on-line Resource guide-Champions for progress
www.spannj.org/transition/TransitionCD/transition tip sheets for teens – statewide parent advocacy network
www.spannj.org/Family2Family/Healthcare_Transition_for_Teens_with_Special_Needs.pdf or Spanish www.spannj.org/Family2Family/Healthcare_Transition_Summary_for_Teens_Spanish.pdf

healthcare transition Resources for Youth & Families – got transition?

FOR FAMILIES: transition Checklist for parents – american academy of pediatrics (illinois)

healthcare transition Resources – got transition

FOR PROFESSIONALS: transition Resources for health practitioners – Champions for progress

Resources related to work, post-secondary education, and independence can be found at Healthy & Ready to Work For Youth By Youth, www.syntiro.org/hrtw/youth/group_etc.html. There is also a website on college, including accommodations, at Think College – College Options for People with Intellectual Disabilities, www.thinkcollege.net/. There are work incentive programs which allow people with disabilities to maintain their eligibility for benefits like Medicaid and SSI. The NJ Workability Program describes how to maintain Medicaid eligibility and Discoverability (transportation) and can be found at www.state.nj.us/humanservices/dds/projects/discoverability/. The Family Resource Network has information on NJ Work Incentive Network Support at www.njwins.org/ There are also general transition resources with good overviews of the entire process at:

student transition workbook – statewide parent advocacy network

transition toolkit tab 2 transition planning – Colorado department of Education

transition toolkit-health – autism speaks (good for all disabilities)

Family Voices national has Kids as Self Advocates (KASA), which is run by youth, at http://fvkasa.org/resources/health.php or Spanish http://fvkasa.org/espanol.php. Centers for Independent Living (CILs) help people with disabilities with activities of daily living and independent living skills www.njsilc.org/. Area Agencies on Aging have now formed Aging and Disability Resource Centers found in each county at www.state.nj.us/humanservices/doas/home/saaaa.html. Editor’s Note. A GPS for Families of People with Special Needs, Part V will appear in next month’s issue of EP magazine •

Lauren Agoratus, M.A. is the parent of a child with multiple disabilities who serves as the Coordinator for Family Voices-NJ and as the central/southern coordinator in her state’s Family-to-Family Health Information Center, both housed at the Statewide Parent Advocacy Network (SPAN) at www.spanadvocacy.org

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