Posted in Adult Day Programs for Special Needs, Autism, Autism Spectrum Disorder (ASD), Dual Diagnosis Down syndrome and autism

Autism Awareness Month: Final Thoughts

Autism Awareness Month: Final Thoughts

autism awareness 2016

April is Autism Awareness Month, and I’ve written all month how awareness is not enough. Individuals with autism and their families need understanding, acceptance and inclusion in society. Individuals on the autism spectrum (ASD) need various levels of support to become as independent as possible. This type of support can’t be provided without funding.

Here’s a sobering fact- “In the documentary, Autism: Coming of age it is reported that in the next 10 to 15 years, an estimated 800,000 children with autism will age out of the school system and transition into adulthood. Then, they will look to ill-prepared state and federal governments for the support services and resources to meet their many needs — a situation autism experts refer to as the “coming tsunami.

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Slapping an autism awareness ribbon on a car, isn’t enough anymore. Individuals with autism need various levels of support, and a person centered planning (PCP) to prepare for adult life.

person centered planning

“Wikipedia defines person-centered planning (PCP) as a set of approaches designed to assist an individual to plan their life and supports. It is most often used for life planning with people with learning and developmental disabilities, though recently it has been advocated as a method of planning personalized support with many other sections of society who find themselves disempowered by traditional methods of service delivery, including children, people with physical disabilities, people with mental health issues and older people. PCP is accepted as evidence based practice in many countries throughout the world.”

Person Centered Planning (PCP) is individualized. It can help identify opportunities for employment, community participation/enrichment activities and living arrangements for adult life.  PCP can be done with the school IEP team, to prepare the student for a bright future based on their strengths and needs.

Autism is not going anywhere, the wave is coming in hard. There is a staggering amount of families on waiting lists for state funding who are aging out of the school system. My son Nick is 25 years old and has a dual diagnosis of Down syndrome and autism (DS-ASD). He required a high level of support. Currently, Nick attends an adult developmental training program that is covered by funds through a state waiver. All across the country thousands of families are on long waiting lists, to seek such funds to support their child with autism and other intellectual and developmental disabilities. The conversation to advocate for individuals with autism must continue well past April before that tsunami wave hits the shore!

That’s what is in my noggin this week.

~Teresa

Follow Nick on Social Media:
Facebook and Pinterest @Down Syndrome With A Slice Of Autism Check 4/27 Facebook post to watch the documentary, Autism: Coming of Age
Instagram @nickdsautism
Twitter @tjunnerstall

 

 

 

 

 

 

Posted in Autism, Down syndrome, Government/Legal Matters Related to Special Needs

Blog #79~Reboot 2014

Blog #79~Reboot 2014

happy new year 2014

The New Year gives us a clean canvas to start over.  It’s an opportunity to paint a fresh picture.  The past year was full of many challenges and changes.  I am ready to re-boot and here’s why……

2013 started out good until Nick’s birthday in February.

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The heater broke……. We had to bundle up for the celebration….. Here I am with Nick’s grandparents Jim and Theresa….. Brrrrrrrr  🙂

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The first task was to tackle the annual report for “Continuance of Guardianship” of Nick.  It’s a two page form along with a yearly expense report.  As long as you submit this a month before the hearing, there is a good chance it will be approved.  Then, you won’t have to appear in court before the judge.  So far so good…..but not so fast…….

Bam!!!!!!!!

I got a notice from the State Department of Illinois stating that Nick’s benefits would end on his 19th birthday.  I would have to switch over from the child waiver (94 case) and apply for an adult waiver (93 case).   Somehow the PAS agency that I work with failed to inform me ahead of time.  The application process was daunting and the paperwork alone practically killed a whole rain forest.  Nick’s funding was lost for several months which meant we had to pay his respite workers out of pocket.  It took awhile and a lot fumbling through the red tape but eventually the adult waiver was approved.

See Blog #44 located in March 2013 archives for more about this debacle.

red tape documents

During the course of doing all this, I applied for SSI for Nick.  SSI (Supplemental Security Income) is available for persons who have a disability.  Nick has Down syndrome and autism and certainly qualified for this aid.  The application procedure was straight forward, done online and much easier than the process for state funding.  Again, it took a few months and a scheduled phone interview before Nick was able to receive funding.  What I have learned through this past year is that you have to stay on top of things when you are managing an adult with special needs. It’s definitely more time consuming to handle his affairs now then when he was younger.

Early spring brought on several upgrades to the house including  a new roof and siding.  Then in April, the Chicagoland area experienced major flooding. The sump pump couldn’t keep up and the water poured over submerging the basement.

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It took several months to get everything back in order. The garage and  dining room became the “catch all” in the meantime. One word…….. “Mayhem!”

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In May, Nick graduated from high school, what a milestone for big guy!

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During the summer the dry wall was restored, walls freshly painted and new carpeting installed in the basement. I was thankful for my in-laws, Jim and Theresa who helped out with putting things back on the walls, shelves and in the bar area. They were instrumental many times  helping out in 2013.

Vacation was spent in the Outer Banks, NC, it was just what we all needed.  Upon our return, Miss Mellie our beloved cat of 17 years was in poor health.  We had to say goodbye to her.

Rest in peace Miss Mellie……

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In the fall, Hank returned to Northern Illinois University and moved into an apartment.

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Nick started the post-secondary transition program called STEPS, which he will attend until he is 22.   During the fall, new carpet was installed in the rest of the house.  A fresh coat of paint was put on both the boy’s bedrooms. Twelve years and two boys, uh….. let’s just say they needed a complete overhaul!  Carpet installation is quite an ordeal. You have to pack everything up and clean out all the closets much like moving out of a house.

Fresh paint and carpet, sweet! Nick approves……

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Within a week after the carpet was put in, Al was scheduled for shoulder surgery.  40+ years of hard core tennis had taken a toll and the USTA Sectionals in August really did it in.  The surgery was lengthy and the recovery was painful. The worst is behind him; his arm is out of the sling with 6 months of rehab before he can pick up a tennis racket.

reboot

2013 was challenging, painful and filled with many changes.  The house is restored and things are nearly put back together.  I am ready to re-boot and greet the 2014 with a clean slate.  Mostly, I am looking forward to settling down, seeing what the new year will bring, and get back to writing about Nick’s world without interruptions.  That’s what is in my noggin this week.  🙂

~Teresa