Experiences with developmental disabilities?

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JustFoundHere
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21 Jun 2022, 9:19 pm

Anybody experienced with programs geared toward individuals with developmental disabilities - more limiting than the higher functioning parts of the Autism Spectrum?



HeroOfHyrule
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21 Jun 2022, 10:48 pm

I was in special ed. for a year, and did some occupational and speech therapy, but I think that's it for my experience with these types of things.



kraftiekortie
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22 Jun 2022, 9:27 am

I went to a "special school" for children with all sorts of disabilities.

There were classes for people with intellectual disabilities; and there were classes for people who were seen as having emotional, rather than intellectual, disorders. I was in the latter.



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22 Jun 2022, 9:31 am

Do you mean adult programs?

When it comes to programs for adults, there’s a lot of variation depending on one’s location.

Were you thinking about day programs in which people learn life skills or special housing?


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22 Jun 2022, 11:50 am

JustFoundHere wrote:
Anybody experienced with programs geared toward individuals with developmental disabilities - more limiting than the higher functioning parts of the Autism Spectrum?


Yes, when I was 15-16 I was made to join this Mencap group for teenagers with special needs (including autism), but I felt like the most "normal" one there (as in high-functioning, social IQ, etc).
I was the only one out of them who went to mainstream school, as they all went to special schools. Then I went away on a 4-day trip with them, and I did not enjoy it one bit. I didn't belong at all, so I didn't really know anyone in the group, and I felt scared and suffered terrible homesickness.

After the trip I decided never to attend any more meetings with them again. It just wasn't for me. I wanted to have friends that were my own kind, like just "normal-minded" girls at school that accepted me, that sort of thing. I wasn't exactly going to get anywhere mixing with people who couldn't communicate or add 1 and 1 together. I'd be prepared to work with those sorts of people, and to help and understand them in that way, and volunteer to do activities with them, that's OK, but actually being one of the disabled members and befriending them just wasn't really up my street.


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JustFoundHere
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22 Jun 2022, 1:22 pm

Twilightprincess wrote:
Do you mean adult programs?

When it comes to programs for adults, there’s a lot of variation depending on one’s location.

Were you thinking about day programs in which people learn life skills or special housing?


Yes, I'm assessing (or reassessing) services programs for adults.

As mentioned in original post, these programs are designed for clientele with developmental disabilites more limiting than High Functioning Autism (HFA). In short, for those of us with HFA, it's a disadvantage in "not being disabled enough" - my current experience.

My advisor has HFA with auditory processing difficulties. Advisor is in her mid to late 20s (hence a generation aware of ASD) and was in Special Ed classes. I sense that staff are receptive to better understanding HFA - yet lots of time educating, and clairfying seemingly understandable agendas important for HFA with staff, and advisors. Progress is slow.

A few years back, our state services governing developmental disabilites changed eligibilty requirements for services - to allow people with disabilites such as HFA (least restictions to independence) to receive services. Yet, after a few years, understanding, adn serving clientele with HFA still remains a very low priority.

I sense a sentiment of staff who are not used-to HFA clientele - a disadvantage in "not being disabled enough." Go figure!



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22 Jun 2022, 2:58 pm

^^

I think some of the problem is a lack of funding. Near me, they were going to have housing for people with HFA which would include various supports as needed but, in practice, only the people who are very badly off and have no family support but can manage a tiny bit of independence are going to get a space because there’s not enough spots available.

It’s a complex problem when a person is just high-functioning enough not to qualify for anything.

I’m frustrated by situations like this as a special education teacher. There are kids who need support but fail to qualify by a point or two in various forms of testing.


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22 Jun 2022, 3:06 pm

I work in a program that provides services to a wide range of developmental disabilities. Within the past few years, eligibility for those with an autism diagnosis changed. IQ is no longer a factor. Instead there are six domains of functioning and a person must have impairment in at least three of the six.


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22 Jun 2022, 10:13 pm

Twilightprincess wrote:
^^

I think some of the problem is a lack of funding. Near me, they were going to have housing for people with HFA which would include various supports as needed but, in practice, only the people who are very badly off and have no family support but can manage a tiny bit of independence are going to get a space because there’s not enough spots available.

It’s a complex problem when a person is just high-functioning enough not to qualify for anything.

I’m frustrated by situations like this as a special education teacher. There are kids who need support but fail to qualify by a point or two in various forms of testing.


Thank-you for your feedback. The focus here is with adults who are beyond special ED. services.

The support services for adults are usually designed for developmental disabilites more limiting than High Functioning Autism (HFA). Many clientele of support services cannot operate private vehicles, and need at least some on-site face to face services e.g., assistance with such things as budgeting - that is a prescribed set of specific independent-living services, a set of services whose delivery is usualy routine, and predictable.

In short, service providers can readily "stamp their forms" upon delivery of services. Guess what? The prescribed, routine (predictable) set of servicies are not appropiate for clientele with 'least restrictions to independence' such as HFA.

For example, I'm seeking the services of our local credit union's financial coach service to act as an advisor - quite a diversion from the bare-basic lessons of budgeting skills. In short, my service-provider cannot "stamp their forms" so easily to acknowledge delivery of services.

Lately, I've felt, I'm taking service time away (in a small way) from clientele who need intensive support services - all on account of developmental disability agencies (and even families of clientele) who've been unable to ask the hard question of "how to best serve clientele with least restrictions to independence??"



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23 Jun 2022, 4:22 pm

JustFoundHere wrote:
Twilightprincess wrote:
^^

I think some of the problem is a lack of funding. Near me, they were going to have housing for people with HFA which would include various supports as needed but, in practice, only the people who are very badly off and have no family support but can manage a tiny bit of independence are going to get a space because there’s not enough spots available.

It’s a complex problem when a person is just high-functioning enough not to qualify for anything.

I’m frustrated by situations like this as a special education teacher. There are kids who need support but fail to qualify by a point or two in various forms of testing.


Thank-you for your feedback. The focus here is with adults who are beyond special ED. services.

The support services for adults are usually designed for developmental disabilites more limiting than High Functioning Autism (HFA). Many clientele of support services cannot operate private vehicles, and need at least some on-site face to face services e.g., assistance with such things as budgeting - that is a prescribed set of specific independent-living services, a set of services whose delivery is usualy routine, and predictable.

In short, service providers can readily "stamp their forms" upon delivery of services. Guess what? The prescribed, routine (predictable) set of servicies are not appropiate for clientele with 'least restrictions to independence' such as HFA.

For example, I'm seeking the services of our local credit union's financial coach service to act as an advisor - quite a diversion from the bare-basic lessons of budgeting skills. In short, my service-provider cannot "stamp their forms" so easily to acknowledge delivery of services.

Lately, I've felt, I'm taking service time away (in a small way) from clientele who need intensive support services - all on account of developmental disability agencies (and even families of clientele) who've been unable to ask the hard question of "how to best serve clientele with least restrictions to independence??"


ADDENDUM: I have scheduled a meeting with my advisor, who is with the state agency that acts as a gatekeeper for
non-proft agencies delivering support services. At the meeting, we will address (as mentioned in previous post) measures to better serve clientele who have least restricitons to independence!



JustFoundHere
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30 Jun 2022, 2:15 pm

After educating indepdendent living support staff, and even (at times) nudging them with minor follow-through agendas, I feel it's a "give a little, get a little" type of pattern.

* Anybody find this discussion-thread via WP disc. thread 'Life's Concerns - Posting Here to WP?'?



JustFoundHere
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13 Sep 2022, 7:14 pm

I officially concluded (at my request) services delivered via my local ILS (Indepdendent Living Services) supported by our state's developmental services agency via a scheduled half-hour meeting - as confusion amongst service providers regarding personal goals, agendas, etc. etc. was brought to my attention.

The succient reason via consensus? -- I was 'NOT DISABLED ENOUGH' to best benefit from services - that is ILS services are geared towards clientele who have disabilities more limiting than High Functioning Autism e.g., classic Autism, clients with developmental disabilites, clients who are ret*d. I sense, that ILS staff were grappling the misc. office task in-order to discontinue my case. In short, this ILS provider was hard-pressed to stamp their forms regarding my ILS case.

The disadvantage of being flagged for being 'NOT DISABLED ENOUGH' is a dilemma I know all too well - a dilemma I had personally sworn to avoid long ago. What also bothers me was that my ILS provider (at the beginning of the scheduled meeting) was insistent that my family be present at the meeting, and telephoned my family in-order to be present at the meeting.

I talked my ILS provider into telephone input from family only. The ILS service-plan was originally orientated around allowing my family to play minor roles - my ILS provider's decision to ask my family "out of the blue" to be involved in this meeting quickly become a lot more than a minor involvement - that is, my ILS provider (unintentionally) brought unnessessarily upset my family and I!

I couldn't really express a necessary apology when I made a follow-up to my family after the meeting! Was my ILS provider that hard-pressed to stamp their forms??

Next order of business: I need to talk to my state agency's advisor (the gate-keeper(s) to ILS support) who we also like very much as a person, and explain....in short, the above written post. In short, I want my local ILS provider staff to hear the situation (as discussed the above written post) from my state advisor esp. unecessarily upseting my family.

In regards to our state's elegibility criteria for developmental services: In 2015, elegibilty for clientele with least restrictions to independence e.g., High Functioning Autism was expanded.

With seven years since the new elegibility criteria was enacted, progress has benn way too slow in acknowledging clientle with least restrictions to indepedence.

I've asked my state agency advisor to contact our state agency's headquarters to find specific Calif. statewide cases of clients who have least restrictions to independence. Requested statewide assessment criteria: Clients who have little to no need for ILS services, and cleints on the Autism Spectrum.

Such a statewide survey of clientle would best boost efforts to establish best practices appropriate for clientele with least restrictions to independence - that (as mentioned above) does not include input from my previous local ILS provider.

I can mention that such information would not only curb alot of confusion, but also yield those much needed perspectives encourging important progress!



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13 Sep 2022, 7:27 pm

I went to a developmental pre-school at the age of 5. I was in a special ed kindergarten class. I was in special ed 70% of the time in grades 1 through 4. I was in special ed 50% of the time in grades 5 to 7. I was mainstreamed 70% of the time from grades 8 through 10. I was in special ed 50% of the time in grades 11 and 12. I went to a special ed program in college where students spent three weeks in class and 4 weeks on a work experience.


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JustFoundHere
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13 Sep 2022, 8:11 pm

My emphasis here is on services available (or desperatly needed and limited) for adults.



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14 Sep 2022, 11:32 pm

That would be my college experience.


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15 Sep 2022, 10:25 pm

I worked for an organization that provided that type of service.