Assistance for those on the Cusp of Adulthood

Autism strikes a family’s heart, soul and wallet.  Estimates by The Autism Society puts a lifetime of care for an autistic child at $3.2 million.  Autism parents know firsthand the brutal toll to the family coffers of therapies that can run $40,000 to $50,00 per year.  Families tangle with insurance companies, invariably ending up with many out of pocket expenses.  Educational instability generated by schools unable to provide a safe learning environment creates tremendous hardship as parents relinquish employment to home school their child, or move them to private schools in search of the elusive best case scenario.  Relocation to other states is frequently necessary to track down more generous insurance, autism services and competent school systems. 

Having personally endured harrowing financial hardships raising my twins with autism as a single parent, I recently found a measure of peace through successfully attaining Social Security Insurance (SSI) for one of my sons. This is disability insurance that pays a monthly amount of about $700.  You have to be in dire straits to receive this money before your child turns 18 because the family income is then included as a determinant of eligibility.  However, after your child turns 18, family income is no longer counted, and your child receives that income even if he lives with you indefinitely.  The application can be done over the phone in an hour and a half.  Releases are signed so you don’t have to submit hard copy records.  It takes up to 6 months for the application to be processed and you receive three months back payment in a lump sum, a nice reward for your patience. 

After your child turns 18, you as the parent can also apply to his paid caregiver, receiving a paycheck for between 30 to 200 hours per month.  Pay is low, of course, ($10/hour plus 7 hours of paid training), but why not be compensated for what you already have done around the clock for the last 18 years? 

Another door that opens is Vocational Rehabilitation, a service that identifies your child’s employment needs and helps them to achieve them.  Some cost is involved unless your child is on SSI.  This program does not pigeon hole your child in menial, repetitive tasks, but truly supports whatever their individual needs may by paying for higher education and/or training programs and the supports that may entail, like transportation or a personal aide to attend classes and help them navigate their day. 

If you need help, avail yourself of it.  God knows, you’ve earned it.

About the Author
Susan Moffitt