December 2, 2013

Services for Individuals with Autism

Posted in AMT's Faves tagged , , , , , , , , , , , at 12:07 pm by autismmommytherapist

autism symbol

This last few weeks have entailed more excitement than usually transpires in a year around here, and I have much to tell all of you. I’ve already shared the fabulousness that is my eldest child in regards to his hospital stay and our trip to Disney, but I would be remiss if I didn’t share my newfound knowledge as well. I had the good fortune to attend Autism New Jersey’s annual conference recently, and managed to participate in three workshops which were informative (and even entertaining) during the course of the day.

One related to residential placements which is a post for another day. The last two I attended were entitled “Navigating Services”, and pertained to discussions regarding the New Jersey Department of Children and Families, the New Jersey Division of Developmental Disabilities, Medicaid, and SSI, among a myriad of other topics.

I consider myself pretty well informed on the above issues as I am frankly terrified of missing something that would be to Justin’s detriment (I’ve found a heightened state of anxiety makes me more meticulous when conquering paperwork), but I learned a lot during the sessions, and would like to share my knowledge with all of you here.

The presenters were S. Paul Prior, Esq. and Maria Fischer, Esq. of Hinkle, Fingles and Prior, P.C. They were extremely knowledgeable in their presentation (which at times was hilarious even though they are lawyers), and I thought some of their facts would be helpful to all of you. It’s a lot of information, and they shared even more information with us than I will include here. The facts below were in my opinion the most important pieces of information, and a good place to start with educating yourselves. I’ll present them in bullet form (that’s how I retain anything these days). I hope this information will be helpful to all of you!

· Before 1/1/13 the DDD (Division of Developmental Disabilities) provided services birth to death for individuals with autism or other developmental disorders- now the Division of Children and Families (DCF) provides these services for individuals up to the age of 21

· EXTREMELY IMPORTANT- Any individual born after 1/1/97 MUST reapply to the DDD when he or she is 18 years old, even if they’ve registered with the DDD in the past (this is the big “secret” nobody seems to know about)

· To qualify for DDD or DCF services the individual must exhibit functional limitations in three out of seven areas of “major life activity”:

-self-care -receptive/expressive language -learning -mobility -self-direction

-capacity for independent living -economic self-sufficiency

· Children found eligible for services by the DDD prior to 1/1/13 DO NOT have to apply to DCF

· When applying for any services you will have to fill out an adaptive behavior summary form. It is imperative when filling this out that you answer the questions as if you comparing your child to a neurotypical child. THIS IS NOT THE TIME TO DISCUSS YOUR CHILD’S PROGRESS OR ACCOMPLISMENTS

· Some of the services DCF can provide include respite care, behavioral supports, residential placements, and in-home support

· At 21 your child will receive services through the DDD as long as the individual is eligible for Medicaid. At age 21 or 22 your child’s educational services will cease. This is where the DDD can provide both day programs and residential services. Individuals can be placed on the Community Care Waiver (CCW) waiting list for residential services if parents are both 55 and older; the person caring for the individual with a disability is no longer willing or able to care for the individual; there is a risk of abuse or neglect; one parent has a chronic condition and can no longer care for the individual; the person’s safety is at risk due to behavioral or physical needs. Unfortunately, the wait for residential services can be from 10 to 12 years after eligibility is established

· At 18 SSI (Supplemental Security Income) kicks in. The individual with a disability may not have more than $2,000 in assets at any time, or make more than $741 per month. FAILURE TO HEED THESE RULES WILL RESULT IN FORFEITING SSI FUNDS

· Applying for SSI automatically gets you Medicaid

· IMPORTANT- MAKE SURE NO FUNDS ARE IN THE CHILD’S NAME. If your child inherits anything from you or a grandparent he or she will be rendered Medicaid ineligible

· SPEND THE MONEY MONTHLY on food, clothing and shelter. It is supposed to be spent on the individual, and remember, he or she cannot have more than $2,000 in assets in their name at any time


  1. Great info! Thanks for sharing!

  2. Damian said,

    I’m wondering if there is anyway my family and I can volunteer. I have a 12 yr old step daughter and my girlfriend and I just had our first baby boy together. I really want to teach my step daughter the importance of volunteering and I figured this would be an awesome cause.

    I just read your blog article in the Point Pleasant Patch regarding the Special Olympics, thanks!

    • You’re welcome! I’m sure Special Olympics welcomes volunteers. I’m certain the event would have quite an impact on your step-daughter. Maybe we’ll see you there next year! Thanks for reading!

  3. jan said,

    I know of a mother of a severe autistic child who is leaving the state of NJ as the waiting lists are impossibly long after 21. Services in NJ basically suck after 21. NJ really is far behind in adult services. My advice…get out. You’ll be stuck with nothing.

    • Jan, that seems to be the present state of affairs, I’m hoping it gets better. If not, we are prepared to leave after my youngest graduates. Sad to have to think that way… Thanks for commenting!

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