December 30, 2014

The ABLE Act

Posted in My Take on Autism tagged , , , , , , , , , , , , at 11:57 am by autismmommytherapist

I have made a daily habit of reading the Autism Speaks blog, and was so heartened to recently read this post, and happy to write about it. On December 19th President Obama signed the ABLE Act (Achieving a Better Life Experience) into law, thus finalizing an eight-year campaign by congressmen and advocates alike to establish tax-free savings accounts to help individuals and families pay for their long-term needs. This will enable families to plan for what often seems like an uncertain future for their children with disabilities, and will make that planning just a little bit easier.

And as I think of my eleven-year-old who will definitely require life-time care, the passage of this act into law helps lift some of the fear of how we’ll care for him during the decades he won’t be with us.

The bill garnered bi-partisan support, and came to fruition due to the efforts of Senators Bob Casey (D-PA), Richard Burr (R-NC), Harry Reid and Mitch McConnell. Senators Ron Wyden and Orrin Hatch played vital roles as well.

The ABLE act permits tax-free savings accounts to help pay for disability-related needs. The law eliminates the current $2,000 cap on savings for disabled individuals. Prior to the ABLE law if disabled individuals had more than $2,000 in their savings accounts they were at risk for losing their SSI (Supplemental Security Income,) as well as Medicaid. Under the new law funds saved would have to be used for disability-related needs.

Families of individuals with disabilities and disabled individuals themselves can now save for such things as education, housing, transportation, health issues, and other expenses as well.

I will share with all of you that thinking about Justin’s adulthood, particularly when his father and I are no longer here, is the most daunting aspect of his autism to me. The passing of the ABLE Act makes me breathe just a little easier.

My hope is that for anyone who didn’t know about its passage and reads about it for the first time here today, that the knowledge that it’s now out there will do the same for you as well.

Here is a link to what Shannon Knall, CT Autism Speaks Policy Chair and autism advocate has to say about the passing of the ABLE Act on the Autism Speaks blog:|+Official+Blog%29

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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