Susan's Blog

Wednesday, June 15, 2011

Developmentally Delayed –Not Developmentally Defunct!

DayHab is not going to cut it, for all the kids with disabilities who have come up through the schools, since IDEA. These are educated children, with skills and aspirations. They have not been relegated to basement classrooms, attics, and institutions. Excuse my language, but what the FUCK is going to happen if our adult services system doesn’t change with the times?  We educate people for a good reason, not out of vanity. Let’s put those public education $ to use and not let people languish.

How will this change come about?  Not by stripping Medicaid of its funds.  But by bringing people with disabilities to the table (and their families), the government’s table, we can infuse the adult services system with new blood.  New blood means new ideas.  Medicaid Day Hab programs have got to become more flexible for all of the new populations using them.  Shelves of toys and television are a waste of our country’s most valuable resource:  people.  Any people, every person alive has a purpose, has something to contribute.  There is no such thing as people who are “out of it,” or “low-functioning.”  There is only exhausted parents, teachers, and caregivers, who have run out of inspiration and hope.  And funds.

We need some new ideas.  We need some research into adult developmental disability and how to keep those minds growing.  My way of thinking is:  We are Developmental Delayed, Not Defunct.


Amen, Susan. Well put.

— added by Liane on Wednesday, June 15, 2011 at 1:55 pm

Yes, yes and yes Susan!!!

— added by Penny on Wednesday, June 15, 2011 at 8:54 pm

Well said!!!

— added by Suzette on Thursday, June 16, 2011 at 1:09 am

” There is no such thing as people who are “out of it,” or “low-functioning.” ”

Susan, I hope it makes you feel good about yourself to make a statement like that. Unfortunately your statement is not true.

You are not helping those persons who are severely affected by disorders like autistic disorder, those who have serious intellectual deficits and lack the ability to function independently by making such statements. You are hurting them by denying their reality and by assigning blame to them and family members because they do not meet your high standards. In the area of autism persons who lacks substantial functioning deficits should not receive a diagnosis under the DSM and should not be described themselves as autistic. The proposed wording of the New Autism Spectrum Disorder, despite some questionable components, does make the functioning issue clear in Criterion D of the 4 mandatory criteria to meet an ASD diagnosis:

“D. Symptoms together limit and impair everyday functioning.”

As you are probably aware the three categories in the New ASD are distinguished based on functioning levels:

Level 1 Requiring Support

Level 2 Requiring Substantial Support

Level 3 Requiring Very Substantial Support ”

Being positive about facing challenges should not be taken to the extreme of denying that many people have disorders that in fact render them low functioning and dependent on the care of others in order to live.

— added by Harold L Doherty on Thursday, June 16, 2011 at 4:57 am

Harold, I am speaking on a broader level than the boundaries of DSM. I certainly understand those severely affected by disorders like autism meet criteria you present. Nat clinically matches DSM criteria. No matter how much support he needs, I am fighting to make this world see that he is a full person with so much to offer. Not Nobel Peace Prize type of contribution, but perhaps even more important: making us see that, where before we might have dismissed him. But I think that *you* do people a disservice by defining them by DSM and binding them to that. I’m talking about looking at the whole person, no matter how disabled, and seeing that there is a real person there with something to give. We have to make the effort to see it, get out of our comfort zones. Many people in this world still don’t know that. I don’t agree that this does anyone a disservice, particularly in that I’m stating over and over that we need these programs to bring out our highest potential, no matter where on The Spectrum we may fall.

— added by Susan Senator on Thursday, June 16, 2011 at 7:07 am

AMEN Susan and very well put. Thank you for your HELP!!!I continue to support…

— added by AmySue Erickson on Thursday, June 16, 2011 at 9:34 pm

Maybe the limitations of current available Day Hab solutions will help you and others recognize the importance of agricultural communities for those adults with autism who want this important lifespan model. Please take a look at the new website linked below that discusses (and also links to) the leading organizations across the country. The site posted the group’s written comments objecting to the choice limiting CMS definition of Home and Community Based Services Wavier “Settings”, which discriminates against these models. You should definitely read the appendix, which relays a few “stories” of adults with autism whose lives have been enhanced by meaningful life and work “on the farm”.

[Edited text follows]: There are many who need highly intensive supports and form communities within the larger community. Independent living ain’t for everybody.

Agricultural Communities for Adults with Autism

— added by Dadvocate on Friday, June 17, 2011 at 9:18 pm

Susan, please check out options open to parents in NYS. We have a wonderful Person Centered Program called Self-Determination/Consolidated Supports and Services funded by our Office for People With Developmental Disabilities. This can be duplicated in your state too, if parents like you advocate for change. It’s the best way to help our kids keep growing and learning just like the rest of us. Check my latest post to read all about it.

— added by Sherry Rubin on Tuesday, June 21, 2011 at 4:03 pm

Sherry, we, too have People Centered Programs, Self-Determination, but there are many parts to put together and DayHab remains the one entitlement folks can count on, yet it really needs some tinkering to better meet the needs of the DD population.

— added by Susan Senator on Tuesday, June 21, 2011 at 4:27 pm

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