A Seat at the table..problem solving

[Guest guest]

Due to my recent litany of questions, I was asked very nicely if I had

thought through any solutions, to the problems posed. Also, requested was

suggestions on what to do next, depending on the outcome of the CAA.

First I want to give a brief history, best seen at Kolin’s

website www.kolinsjourney.org. Kolin

was diagnosed with Moderate/Severe(mostly severe) Autism in the summer of

2001. Since that time, we have worked to help him using all means

possible. We did biomed, we did ABA,

we did SI, we did effective Behavior Treatment Plans in school and we focused

on how to bring the best out of him. Kolin lost his medical

diagnosis. My partnership with the school has allowed us to continue

necessary services, by putting off his reevaluation of eligibility because we

know he would be found ineligible. He graduated from speech last year,

with the highest scores in non-literal language the speech path had ever seen

in any of her students. Kolin is in regular third grade this year, an

honor roll student, in advanced placement math and a member of the Cub Scouts.

We did this as family, without going bankrupt or losing financial solvency.

The ABA we had

paid for by TRICARE, before the changes made in 2002 that O’Hanlon

wrote about. We were one of the few families to access it then. Now

it is impossible. I have been following this since it passed and was

funded in 2002.

As I said, I became a professional. I worked as a Parent

Education Coordinator for one of the two national Parent Training and Information Centers funded under IDEA. I also

work for the DOD as an Army Family Program Manager for two, line item funded

programs. However when it came time to use the money, it was up to the discretion

of the installation Commander as to whether I would see it to run the

programs. Also, one of the programs was a specific committee based, issue

oriented, program to bring change to the Army community, know as the Army

Family Action Plan. As a program manager, facilitator and historian for

the program, I became we versed in how group dynamics can be manipulated by

professionals brought in as Subject Matter Experts who proclaim the issue does

not exist, even when the issue being discussed is obvious. My most recent

professional position was as a Support Coordinator (Case manager) for the Arizona

Division of Developmental Disabilities, which is one of the most comprehensive

and responsive to the DD community. In AZ, ABA is funded through Medicaid, Title 19 and

there is no waitlist for access to either Medicaid or waiver programs.

The only wait is for providers. My focus was Autism and Early

Intervention.

My personal focus has been and will be on the benefits of actions for families.

My professional, volunteer and personal passion is helping families understand

systems and bureaucracies which hinder their ability to ensure the best

possible outcome for themselves. It is from that perspective I bring

solutions and question the actions of others. It is not that the

organizations out there do not have, in their mission and focus, the desire to

help families. I know several, whose works in a variety of family focused

services are wonderful contributions to the autism community, NAA, UA, Autism

One, and Generation Rescue. AS has done tremendous things to bring notoriety

to the issue of autism incidence, however there does not seem to be a consensus

of what they are working toward.

In spending time with families, reading, listening and understanding

the ground for myself, the following is what seems to be imperative to most

families out there today. Yes, many want to be vindicated and the

research could show this. But research should focus on treatments, biomed

research is occurring, behavioral is occurring, replication is occurring.

But with all the research, parents also need to be taught to how and when to

use it effectively. Along with the knowledge on how to work with the bureaucracies

and the normal due process of federally funded entities.

It is standing our ground

about what we know, what we have seen, and how many of those affected that has recovered.

It is also by taking it to the states...taking it to the counties...taking it

to the schools. It is through helping families learning how to help their

children to a successful outcome, of whether it is independent living, employment,

college, school or recovery. That is done through education, intervention

and treatment.

Maybe we should be looking for a treatment bill versus a research

bill. A research bill does nothing to Combat Autism for kids 6 years or

older, which is the majority of the kids out there. It may hopefully work

to prevent more children from being affected; if it is allowed to be published

and recognized (The funder can revoke the right of publication, if the contract

for funding is written with that clause). A change to the paradigm

through a definition change, using the CDC referenced definition as supportive

evidence. That could address the federal paradigm as untreatable...which

is related to the mental health aspects not the neurological, as defined by the

CDC.

Inclusion of the mandate of coverage under the Employee Retirement Income

Security Act, so that Group benefit plans would have to consider the options

such as done with postpartum stays of 48 hours or mammograms and well women

checks. Another idea is strengthen the mandate for Mental Health Parity

and anti-discrimination under Insurance regulations for Autism/Aspergers.

More families would benefit from half the amount allocated for research

related activities, $250 million, to treatment through the listed entities of

the bill, Dept of Ed, Medicaid & Early intervention. Increase funding

to education of providers and bringing the standards to highly qualified based

on current research to those who teach the professionals. Encourage following

the lead of Medicaid Waiver demonstration projects for effective delivery of

services.

Lastly, the idea of a tax credit to help families has been floated

around, which could be beneficial as well.

Fixing the current CAA to reflect a bill that actually works directly

to help families would take a real commitment by all the negotiators to those

ideas, with little room for compromise, negotiations and denial of allowing

those with conflicts, either direct or indirect, from calling the shots. Also,

the idea of allowing the IACC of directing the funds is appealing, it still

would need to have the approval of the NIH to go forward. Plus the

previous point regarding the make-up of the IACC along with the decision of

inclusion of such a board, make it difficult ensure accurate representation.

The IACC, although, supposedly independent, is a bureaucratic board and thus

those selected for the board have a specific ways of selection. Who will

have oversight of that selection?

I hope this helps in explain alternate ideas for ways of combating

autism.

Thank you,