Is My Child’s Independence Compromised?

I’d be willing to bet many parents of adult special needs offspring take deep calming breaths when the topic of future housing arises. Speaking for myself, with no solid resolution in sight, it’s easy to spin into a panic.

Currently, the budget we receive from our state’s department for developmental disabilities is enough to cover A.’s day program only four days a week–not a full five. Originally, our preference was to have A. in an educational residential program where he’d live what he’d learn such as maintaining his own (shared and supervised) apartment and other important skills for daily living.

Budget is determined by the level of service and remediation a client needs. In theory this makes sense. However, apparently a client needs to be much lower functioning in the eyes of the agency to be qualified for such a residential program. Odd. I would have thought since A. has the potential to reach a higher degree of personal independence, he’d be the perfect candidate for skill advancement in a residential setting.

After years of careful planning, anticipating A.’s interventions and programming, I’m completely stumped as to how to pin down his care later on in his life and ours. If there are viable resources, I can’t find them. The closest we’ve come is to put his name down on a waiting list that can be as long as ten years. Hardly a solution.

 

The prospect of my adult child living with us for the foreseeable future and then some is not only disheartening and unsettling but limiting for us as well as him.

On a related note, heath care is a hot topic of late. I’ve become particularly interested to learn how various U.S. states and even other countries manage care particularly as it relates to special needs issues. For instance, many have national health insurance. Perhaps we can find some kernel of possibility for us by mining what works in other places.

 

Readers, I’m eager to hear:

 

Are you happy with your state’s ability to meet the need of your adult child? If so, what type of situations are offered?

 

Do you live in another country? Are you pleased with its health care in general and special needs care in particular?

 
I’m eager to hear people’s thoughts.
 
X,
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7 thoughts on “Is My Child’s Independence Compromised?

  1. Really excellent.

    On Feb 13, 2017 10:20 AM, “What Now: Parenting for Special Needs Young Adults” wrote:

    > Berger’s Blather posted: ” I’d be willing to bet many parents of adult > special needs offspring take deep calming breaths when the topic of future > housing arises. Speaking for myself, with no solid resolution in sight, > it’s easy to spin into a panic. Currently, the budget we r” >

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  2. I am a 28 year old with autism. I also have very severe misophonia. I live with my mother, still, and I feel so unwelcome in her home at this point. I say her home, because that’s what she always tells me it is when inevitably get into an argument.
    I desperately need space of my own, but I realize that I am not fully capable of taking care of myself right now. My mother is no longer willing or able to take care of me.
    I cannot find any type of housing solution in my state, Mississippi. I am on Medicaid, but that does not provide me with housing options.
    I have a bachelor’s degree in biology, but I am unable to work due to the severity of my misophonia.

    There is NOTHING HERE for people like me.

    Liked by 1 person

    • Lainey, thank you so much for responding. My heart goes out to you. Is there anyone you know who can help you find appropriate housing and assistance? Is moving to another state possible in order to get what you need? Thank you for sharing 🙂

      Liked by 1 person

  3. Tennessee has started a new program, ECF CHOICES, (Employment and Community First) and we are hoping that it’s going to be great. There have been a LOT of bumps in the roll out. It’s purpose is to help individuals work towards independence and employment, and to meet the needs of individuals who are high functioning and would have never had services before. This population has always been “fall through the cracks.” These are ones who, with just a little bit of extra help can work, can live on their own and function. My son is their poster child btw!

    I am encouraged the state is trying this. But, at the same time very discouraged by the new federal guidelines for both inclusion into the community and workplace. Inclusion is great; having choices is even better!

    I don’t know that there have ever been good solutions. My guess is that the majority of individual’s care was passed on to another relative when the parent died. Not an option for many people and the state run group homes were the emergency default.

    Here are three thought provoking examples that were the winners of residential programs that meet three levels of need: https://www.autismspeaks.org/about-us/press-releases/autism-speaks-unveils-house-home-prize-winners

    We particularly like the First Place one, but instead of transition, doing an apartment mix with seniors and individuals who can live independently with once a week supervision. We’ve formed a development team and are working with a group of seniors who liked the idea of “co-housing” and “social justice.” However for the 75% of my development team, this is not an option, their children need higher levels of supervision.

    I am hopeful the ECF CHOICES is going to be a solution for son. With a small amount of funding from the state that gets him 1 hour a week of help and INFINITE time from mom, he has lived in his one bedroom apartment now for six years.

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  4. What state do you live in? In California, the Regional Centers will pay the tuition cost of an independent living program. The family pays for the housing portion. My son Jacob is in his second year at CIB Berkeley. Even with regional center covering the tuition, the cost of the CIP housing in downtown Berkeley is beyond our affordability. It was $24,000 a year for 2015-16 and $27,000 for 2016-17. It is going up to $29,600 for 2017-18. Jacob’s $1140 a month SSDI pays a portion so our cost has been $18,000-$20,000 per for housing, plus $500 a month for food/expenses. Jacob wants to remain in the Bay Area when the program ends in late July but he may end up homeless with no place to go. We (his parents) no longer live in Northern CA and he doesn’t want to live with us anyway. I would appreciate any thoughts or advice any of you might have!

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    • Amy, I’m so sorry for your worries. I live in NJ and there doesn’t seem to be anything similar here. Is there no alternative for your son once his current circumstances ends? Is there a professional you can consult? I see you’re also on the LINKEDIN page. Perhaps someone has some thoughts there.

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