The CA Regional Center System & High-Functioning Autism?

[MROSS]

What is ILS? (yes, this is meant as a rhetorical question). ILS is an acronym for (Independent Living Services), services that are offered by the CA Regional Center System (established by the 'Lanterman Act') to assist developmentally disabled clients with both routine, and not so routine tasks of living independently.

At first glance, ILS seems like some type of impersonal bureaucratic acronym, yet represents services crucial to boosting independence. For the most part, ILS services are responsive to the needs to their clientele.

In late 2015, the CA Regional Center system redefined it's eligibility requirements to serve clients with mild developmental disabilities e.g., High-Functioning Autism, Aspergers.

Yet, ILS resources have changed very little in response to the 2015 eligibility criteria; hence ILS resources largely remain unresponsive to clientele with "least restrictions to independence."

The notion of CA Regional Center services yields both surprise, and disillusionment for many with Aspergers. Hence, the ILS acronym is treated as…..a meaningless acronym for valid reasons.

Author Steve Silberman wrote the February, 2016 story 'Why is Silicon Valley the Home of Autism?’ (LINK to story at bottom of post). (Silberman is also the Author of the book ‘NeuroTribes: The Legacy of Autism and the Future of Neurodiversity.’)

Silberman’s story mentioned Ron Huff of the California Department of Developmental Services (the agency that oversees developmental services in CA). Huff assessed data from the agency’s Regional Centers in the Silicon Valley area, as well as data elsewhere in CA.

Huff’s findings indicated the Silicon Valley area has a disproportionately strong demand for Autism services. The question that begs to be asked, and answered, “Did Mr. Huff’s assessments take into account the demand for services appropriate for High-Functioning Autism?”

Up until the February, 2016 article 'Why is Silicon Valley the Home of Autism?’ there have been no published mentions of Ron Huff himself. No mentions of the growing efforts on the parts of both CA Regional Centers, and their non-profit vendors (under contract for ILS services) to develop, and support services appropriate for clientele with "least restrictions to independence."

Ron Huff’s findings seems to present something like “a goldmine of resources” to encourage the support, and development of services to serve an increasingly diverse clientele. Yet, it appears that a key “window of opportunity” has ended-up “lost in the shuffle!!” Let’s go beyond asking..WHY??

From the start, it appears that reassessing, and adding services aimed at an ever diverse clientele is “a win-win situation across the board” for both clientele, and service providers alike; such as new opportunities for service providers to receive much needed funding, as well as important experience to better assist their entire clientele.

Yet, are many service providers concerned that expressing interest in even slightly “out of the box” approaches will place their jobs in jeopardy?

Regardless, it’s very much like a situation where our own allies are seemingly “asleep at the wheel” - and sooner or later, everybody’s interests are hurt “across the board!”

Still “scratching our heads” and asking....WHY? What gives?

LINK: 'Why is Silicon Valley the Home of Autism?’ http://www.mamamia.com.au/autism-research/

Thank-you

 

[MROSS]

ADDENDUM:

Before, this thread "falls off of" page 1 in the 'General Autism Discussion' Forum, It's somewhat surprising (and disappointing) that no responses have been added to this important thread (even after 60 or so views as of this writing).

"Struggling with systems" "supposedly" becoming more receptive to providing responsive services for clientele with "least restrictions to independence" are very common, and frustrating experiences.

To further reassess, and hence further discussions might just spur necessary developments to boost both the quality, and diversity of services; which is what the original post is about!

Why the lack of such important discussion?

For starters, let's assess the approaches that "appear ahead of the curve" so to speak!

If you live in, or can visit the Southern New England Region, 'The Asperger / Autism Network' (LINK) in the Boston area also seems to provide a good approach to responsive services regarding Aspergers. LINK: www.aane.org

Can the CA Regional Center System, and their non-profits on contract e.g., UPC, 'TheARC' draw parallels to, and best practices from the Autism / Asperger Network?

Any other specific approaches that have further boosted those concerned with Aspergers?

Thank-you

 

[Rocco]

Is this for a treatment center?
If so where is it?

 

[Judge]

Is this for a treatment center?
If so where is it?

Regional Centers Directory

 

[MROSS]

Thank-you 'Judge' for providing a directory of CA Regional Centers.

What is your experience with the CA Regional Centers?

 

[Judge]

Thank-you 'Judge' for providing a directory of CA Regional Centers.

What is your experience with the CA Regional Centers?

Absolutely none, personally. Like Rocco I was just curious about the subject matter, especially given that I have lived in California more times than any other states. Though seeing you past of the "Lanterman Act" seemed to ring a bell for some reason.

I just haven't lived in California for more than eight years now. But Nevada strikes me as woefully deficient of such care in comparison.

 

[MROSS]

As mentioned in the original post, in 2015 the CA Regional Center system changed eligibility to include clients with mild developmental disabilities e.g., High-Functioning Autism, Aspergers.

CA Regional Centers contract with many non-profits e.g., United Cerebral Palsy (UPC), 'TheARC' to deliver services. Yet many non-profits remain largely unresponsive to clientele with "least restrictions to independence" -- which is not in accordance with the 2105 eligibility criteria.

Did the very advocacy that got CA Regional Centers to change eligibility requirements also steer non-profits to likewise reassess their services?? It seems like non-profits have "fallen out of the loop" towards boosting services for a greater diversity of clientele!!

Is anybody here at 'AspiesCentral' involved with (or know of people) who are involved with non-profit service providers receiving CA Regional Center funds? If so, encourage an "activism of sorts" by engaging more, and more people concerned with both non-profits, and High-Functioning Autism to express the need to expand services!

After all, is a part of AspiesCentral's purpose to encourage that "activism of sorts??"

 

[MROSS]

What is ILS? (yes, this is meant as a rhetorical question). ILS is an acronym for (Independent Living Services), services that are offered by the CA Regional Center System (established by the 'Lanterman Act') to assist developmentally disabled clients with both routine, and not so routine tasks of living independently.

At first glance, ILS seems like some type of impersonal bureaucratic acronym, yet represents services crucial to boosting independence. For the most part, ILS services are responsive to the needs to their clientele.

In late 2015, the CA Regional Center system redefined it's eligibility requirements to serve clients with mild developmental disabilities e.g., High-Functioning Autism, Aspergers.

Yet, ILS resources have changed very little in response to the 2015 eligibility criteria; hence ILS resources largely remain unresponsive to clientele with "least restrictions to independence."

The notion of CA Regional Center services yields both surprise, and disillusionment for many with Aspergers. Hence, the ILS acronym is treated as…..a meaningless acronym for valid reasons.

[ADDENDUM: SEE NOTE at end of post.]

Author Steve Silberman wrote the February, 2016 story 'Why is Silicon Valley the Home of Autism?’ (LINK to story at bottom of post). (Silberman is also the Author of the book ‘NeuroTribes: The Legacy of Autism and the Future of Neurodiversity.’)

Silberman’s story mentioned Ron Huff of the California Department of Developmental Services (the agency that oversees developmental services in CA). Huff assessed data from the agency’s Regional Centers in the Silicon Valley area, as well as data elsewhere in CA.

Huff’s findings indicated the Silicon Valley area has a disproportionately strong demand for Autism services. The question that begs to be asked, and answered, “Did Mr. Huff’s assessments take into account the demand for services appropriate for High-Functioning Autism?”

Up until the February, 2016 article 'Why is Silicon Valley the Home of Autism?’ there have been no published mentions of Ron Huff himself. No mentions of the growing efforts on the parts of both CA Regional Centers, and their non-profit vendors (under contract for ILS services) to develop, and support services appropriate for clientele with "least restrictions to independence."

Ron Huff’s findings seems to present something like “a goldmine of resources” to encourage the support, and development of services to serve an increasingly diverse clientele. Yet, it appears that a key “window of opportunity” has ended-up “lost in the shuffle!!” Let’s go beyond asking..WHY??

From the start, it appears that reassessing, and adding services aimed at an ever diverse clientele is “a win-win situation across the board” for both clientele, and service providers alike; such as new opportunities for service providers to receive much needed funding, as well as important experience to better assist their entire clientele.

Yet, are many service providers concerned that expressing interest in even slightly “out of the box” approaches will place their jobs in jeopardy?

Regardless, it’s very much like a situation where our own allies are seemingly “asleep at the wheel” - and sooner or later, everybody’s interests are hurt “across the board!”

Still “scratching our heads” and asking....WHY? What gives?

LINK: 'Why is Silicon Valley the Home of Autism?’ http://www.mamamia.com.au/autism-research/

Thank-you

ADDENDUM NOTE: On the Autism-Spectrum in Silicon Valley, the BOOK 'NeuroTribes: The Legacy of Autism and the Future of Neurodiversity' offers details.

 

[Bolletje]

I think the lack of responses to your topic is mostly caused by the international nature of these forums.

 

[novart]

Sorry to bump, but since I have related concern and there is worry about not enough interest in this topic...

Why have I been turned down by the regional center (San Diego)? I wasn't diagnosed before 18, so I can't receive any of their services. It's not like the government was perfect to me as a youth. My teachers rolled their eyes at me. I was discouraged from seeking help in any regard, and the overwhelming impression I was given was that every symptom was a personal fault of mine. Why does that discrimination mean I can be discriminated against now? Do I have to push harder, toward people who aren't just the front desk receptionist? I find it an unbelievable barrier. I might be part of a "lost generation" but that doesn't mean we have to encourage it!

 

[the_tortoise]

Why have I been turned down by the regional center (San Diego)? I wasn't diagnosed before 18, so I can't receive any of their services.

I looked them up, and on their own forms it states the condition must "originate prior to age 18" (on the generic california regional centers website it says the same thing in different words: "To be eligible for services, a person must have a disability that begins before the person's 18th birthday, be expected to continue indefinitely and present a substantial disability as defined").

"Must originate/begin" prior to age 18 is not the same as "must be identified before the age of 18" -- they are using flawed additional criteria to ascertain whether or not you were disabled as a child (i.e. the presence or absence of a diagnosis in childhood). Autism cannot even be diagnosed if it wasn't present from very early childhood, so excluding an autistic person on the basis of their age at diagnosis is a bit ridiculous....it could be argued that if a person didn't get diagnosed earlier in life that their disability from autism does not meet severity criteria (you can't just have autism, it's disabling impacts on your life have to be severe enough) but that's flawed logic that doesn't take into account the many reasons why a person with severe enough impairments might not be identified as autistic in childhood (e.g. parental neglect/refusal to accept diagnosis or services, lack of resources or lack of awareness of resources for the family to seek help for their child, misdiagnosis, natural supports from family and community meaning that professional services were never required in childhood).

It's not surprising that they do this, though....lots of times government organizations come up with ridiculous policies that kind-of-not-really match up with their official and/or legal mandates, to limit the number of people who can access their services. (I'm not saying it's some kind of conspiracy nor that it's malicious, it's just what social service organizations do when they are under pressure and have limited funding.)

 

[novart]

I looked them up, and on their own forms it states the condition must "originate prior to age 18" (on the generic california regional centers website it says the same thing in different words: "To be eligible for services, a person must have a disability that begins before the person's 18th birthday, be expected to continue indefinitely and present a substantial disability as defined").

"Must originate/begin" prior to age 18 is not the same as "must be identified before the age of 18" -- they are using flawed additional criteria to ascertain whether or not you were disabled as a child (i.e. the presence or absence of a diagnosis in childhood). Autism cannot even be diagnosed if it wasn't present from very early childhood, so excluding an autistic person on the basis of their age at diagnosis is a bit ridiculous....it could be argued that if a person didn't get diagnosed earlier in life that their disability from autism does not meet severity criteria (you can't just have autism, it's disabling impacts on your life have to be severe enough) but that's flawed logic that doesn't take into account the many reasons why a person with severe enough impairments might not be identified as autistic in childhood (e.g. parental neglect/refusal to accept diagnosis or services, lack of resources or lack of awareness of resources for the family to seek help for their child, misdiagnosis, natural supports from family and community meaning that professional services were never required in childhood).

It's not surprising that they do this, though....lots of times government organizations come up with ridiculous policies that kind-of-not-really match up with their official and/or legal mandates, to limit the number of people who can access their services. (I'm not saying it's some kind of conspiracy nor that it's malicious, it's just what social service organizations do when they are under pressure and have limited funding.)

Thanks for taking the time to look at it. I didn't get into the form, I was just sort of turned away at the office.