Should insurance be the #1 autism priority for 2009? Vote in the poll

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January 1, 2009 at 7:53 pm

(1) Bonnu says:

“Full, supported inclusion of children with autism in typical classrooms” – The 2004 – Individual’s with Disabilities Education Improvement Act (IDEIA 2004 or more commonly referenced as IDEA 2004) does this and more under this Act there is a section named: LRE – Least Restrictive Environment that states all children with disabilities should first be educated in the regular classroom, “to the maximum extent appropriate, school districts must educate students with disabilities in the regular classroom with appropriate aids and supports, referred to as “supplementary aids and services, ” along with their non-disabled peers in the school they would attend if not disabled, unless a student’s IEP requires some other arrangement. This requires and individualized inquiry into the unique educational needs of each disabled student[not a cohort of students with the same criteria name] in determining the possible range of aids and supports that are needed to facilitate the student’s placement in the regular educational environment before a more restrictive placement is considered [ a resource room etc.].
In implementing IDEA’s LRE provisions, the regular classroom in the school the student would attend if not disabled is the first placement option considered for each disabled student before a more restrictive placement is considered.
If the IEP of a student with a disability can be implemented satisfactorily with the provision of supplementary aids and services in the regular classroom in the school the student would attend if not disabled, that placement is the LRE placement for that student. However, if the student’s IEP cannot be implemented satisfactorily in that environment, even with the provision of supplementary aids and services, the regular classroom in the school the student would attend if not disabled is not the LRE placement for that student.” Wrights Law -2009- http://www.wrightslaw.com/info/lre.osers.memo.idea.htm

Creation of a fully funded respite care program for families living with autism – There is a fully funded respite care program that has been in place for years especially for persons with developmental disabilities or related conditions( which Autism is a related condition) in each States here is the Center for Medicaid web site to give you information on how each state has used these monies, if your state has accessed the money at all- http://www.cms.hhs.gov/HCBS/
http://www.cms.hhs.gov/MedicaidStWaivProgDemoPGI/08_WavMap.asp

Universal insurance coverage for autism-related treatments/therapies prescribed by an M.D.
I only caution one should be careful with the language “prescribed by an M.D.” I suggest it should be written “as prescribed by the families M.D.”. The old institutions had M.D.’ s that signed off on all kinds of treatments that had nothing to do with the individual with developmental disabilities individualized needs.

http://www.mnddc.org/dd_act/dd-act.html

January 3, 2009 at 10:55 am

(2) autism says:

Bunu – you’re right, of course, that in theory there are many services available and funded. In fact, few are actually provided and/or available (except to those families with the funds and stamina to pursue them through legal counsel and other means).

Coming from a school district which is, according to its PR, fully inclusive, I can tell you that inclusion WITH APPROPRIATE SUPPORT was not offered for our son – who is, by the way, relatively high functioning, verbal, and non-aggressive. Inclusion without preparation or support, it seems to me, causes more problems than it solves – both for the child with autism and for his typical classmates and teacher.

I can also say that, while respite is sometimes available under some circumstances, for some people, finding and accessing good quality respite care is a major and overwhelming project.

In some cases, Medicaid is available – but so far as I know (please correct me if I’m wrong), Medicaid will not cover a great many therapies often recommended for people with autism.

As regards the “family’s MD” – that’s a tricky point. Most families have primary care MD for the adults, and a pediatrician for the kids. Few general pediatricians are well-versed in autism care. As a result, most kids with autism wind up under the care of one or more specialists – some of whom may be mainstream developmental pediatricians/neurologists, and some of whom may be DAN! doctors or other alternative practitioners.

It’d be tough to manage which doc is acceptable and which isn’t, assuming any individual doc is certified and legal practicing.

Best,

Lisa (autism guide)

January 3, 2009 at 12:53 pm

(3) Bonnu says:

1. “..in some cases, Medicaid is available – but so far as I know (please correct me if I’m wrong), Medicaid will not cover a great many therapies often recommended for people with autism.
———————————- The Web site below explains the Waiver information in my previous post. the 1915j Waiver that allows for an individualized service plan that can include many therapies. Check your States plan.
I have found building natural community supports work very well and if you have the chance to hire respite or personal care attendants choosing a person who is a people person, you know the type they talk to everyone they encounter and they have a large family, works out great.

http://www.cashandcounseling.org/resources/20060404-112138/BackgroundMemoFeb28TechAssistCall2-20-06.doc
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2. As regards the “family’s MD” – that’s a tricky point. Most families have primary care MD for the adults, and a pediatrician for the kids. Few general pediatricians are well-versed in autism care. As a result, most kids with autism wind up under the care of one or more specialists – some of whom may be mainstream developmental pediatricians/neurologists, and some of whom may be DAN! doctors or other alternative practitioners.It’d be tough to manage which doc is acceptable and which isn’t, assuming any individual doc is certified and legal practicing.”

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I do understand it is frustrating to get a Physician that actually looks at and sees the person [the whole person] they are helping, I find it helpful not to waste time with someone who just wants to throw medication at a patient. I had many Doctors I had to educate about my two sons. who are persons with Aspergers. I had two Doctors that just had “the gift” of helping all people, meeting people where they were and actually helped without Psychotropic medications which would have made any unwanted behaviors worse. Turned out my one son had a hearing problem that was corrected without medications.
I built a relationship with the two great Doc’s we found and they in turn only referred us to other Doc’s they knew that would work very well with my sons and our family.
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http://www.whitehouse.gov/infocus/newfreedom/newfreedom-report-2007.html

January 5, 2009 at 10:29 am

(4) Bonnu says:

Autism says, you stated:>>>>>Coming from a school district which is, according to its PR, fully inclusive, I can tell you that inclusion WITH APPROPRIATE SUPPORT was not offered for our son – who is, by the way, relatively high functioning, verbal, and non-aggressive. Inclusion without preparation or support, it seems to me, causes more problems than it solves – both for the child with autism and for his typical classmates and teacher.”…..
As I stated earlier inclusion is covered under IDEA 2004 LRE – Least restrictive environment. This is a legal process if you do not put your requests in writing, your requests do not exist. If they deny you any request they MUST put their denial in writing on a DUE process form with an explanation of why they are denying your request.

January 5, 2009 at 10:57 am

(5) autism says:

Bonnu – you’re right, from a legal perspective. And we did go through a process of writing up specific program elements, meeting with the IEP group, getting the IEP written up and signed, etc.

Unfortunately, the IEP was not fully followed – and/or was followed poorly. As a result, for example, our son was in a typical gym class with an aide. But the moment Tom showed any hesitance about taking part in the gym class, the aide simply removed him. There was no support for the gym teacher, and the aide had no idea what to do. Yes, we could have fought to have training for all, and to enforce inclusion in gym, but it would have taken months of meetings, plenty of cash, and time off work for due process – just for gym.

At one point, our son was “allowed” to be in a typical homeroom setting for 20 minutes during the morning – but because he was unprepared, the class was unprepared, and there was no particular reason for him to be there, he objected. Because he objected, he was “pulled,” and that was that. Yes, we could have fought tooth and nail to have him placed back in that setting – but unless all the supports were in place (not only for Tom, but for the general ed teacher and the students), the experience would have been negative for all.

At one point we asked for and were told our son would have a “lunch bunch” social group, a peer buddy, and video modeling. None of these happened. We asked why, and were told it was impossible because of scheduling issues. Yes, we could have spent days and months and thousands of dollars fighting for these programs – and perhaps they would have been implemented for that year. But we would have had to start all over again a year later (in the middle school).

In short, yes, legally we are entitled to inclusion. But from a practical, financial, and educational perspective – for us – inclusion became an impossible goal. We simply couldn’t afford it. Tom needed an education – now. We didn’t have thousands to spend on advocates and lawyers. We didn’t have the time to take off of work to fight daily and weekly in school meetings. And we didn’t honestly believe our district would do a good job even if we prevailed.

As a result, we chose to homeschool our son – a decision that works well for us.

Lisa

But from a practical perspective we would not only have had to take the district to court (at considerable expense), but we would also have had to enforce the IEP by literally

January 10, 2009 at 1:49 pm

(6) Bonnu says:

Bonnu – you’re right, from a legal perspective. And we did go through a process of writing up specific program elements, meeting with the IEP group, getting the IEP written up and signed, etc.
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I was not talking about writing up the IEP etc. I was talking about putting your request for inclusion in writing. Making a paper trail that would not entail any legal assistance. IDEA 2004 is the only law that brings parents to the table as Equal partners with the school portion of the IEP team. If they denied your request without evaluations showing your child was not able to participate in regular classes with identified supports, your State Education Agency and the Office of Special Education and Rehabilitation at the Federal level would have helped you with the Procedural Safeguards that are in place in the law.
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Unfortunately, the IEP was not fully followed – and/or was followed poorly. As a result, for example, our son was in a typical gym class with an aide. But the moment Tom showed any hesitance about taking part in the gym class, the aide simply removed him. [[[This tells me there was not a sensory diet specifically for your son]]]]

There was no support for the gym teacher, and the aide had no idea what to do. [[[On the IEP there is a place for training for teachers and aides]]]
Yes, we could have fought to have training for all, and to enforce inclusion in gym, but it would have taken months of meetings, plenty of cash, and time off work for due process – just for gym.[[[I put these in place for both my sons and it only took 40 days to get it started then the district did not want to be sanctioned from the state for not following the law]]] My sons are now ages 19 and 21, they were totally included with supports identified in their evaluation summary reports. Data as stated in the Federal Law.