Magazine article The Exceptional Parent

Part Three: A GPS for Families of People with Special Needs

Magazine article The Exceptional Parent

Part Three: A GPS for Families of People with Special Needs

Article excerpt


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 III follows; to review Parts I and II, see the September and October issues of EP magazine.


Families of children with special healthcare needs and individuals with disabilities have financial burdens. According to Families USA, 60% of bankruptcies are caused by medical debt (see The Catalyst Center has a publication, "Breaking the Link Between Children's Special Healthcare Needs & Financial Hardship," at There are things that families can do to avoid financial difficulties. The NJ Community of Care Consortium developed healthcare financing factsheets on topics such as Medicaid/ SCHIP, Federally Qualified Health Centers and hospital charity care for the uninsured, etc. at or . There is also the National Association of Free & Charitable Clinics at

SPAN also developed a factsheet "Economic & Health Resources for Families" for necessities at f/files/Economic%20%26%20Health%20resources_2012_0.pdf or Spanish h_2012_0.pdf.

These resources help with everything from housing and utilities to eyeglasses, hearing aids, etc. NJ also has the Catastrophic Illness in Children Relief Fund which reimburses families for related medical expenses above 10% of household income in any 12-month period. These expenses can include mileage/parking/tolls, phone calls to doctors, hotel stays during hospitalization, etc. The Fund also covers medically necessary home modifications up to $25,000 for things like accessible bathrooms, grab bars, etc. Families must be able to submit receipts and proof of payment. The application can be found at NJ has a referral line by calling 2-1-1 or going to or Spanish bb=1&ie=utf-8 and putting in a search for a service like transportation. In addition, NJ Helps has an online screening tool for possible benefits and links to online applications for things like food assistance, heating help, etc. at or Spanish

Family leave also helps families stay financially stable while caring for their ill member. The National Family Medical Leave Act is a federal law that provides up to 12 weeks of unpaid leave and information is available at NJ was one of the first states to pass a law providing paid family leave for up to 6 weeks and information is available at (for Spanish click on "language" top of page.) Financial planning can also include things like special needs trusts so that the individual won't lose eligibility for future benefits.

Lastly, parents want to ensure that their child is as independent as possible as an adult, regardless of disability. There are Centers for Independent Living that help students and self-advocates gain life skills, postsecondary education, and employment. You can find your local CIL at Vocational rehabilitation services can also help youth and young adults with disabilities gain skills for competitive employment. …

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