Change Agentry - Advocate, Empower, Enlighten

The following excerpts from faxes, e-mail and conversations are all true. Personal details are sometimes changed to insure anonymity.

 " It is the paramount duty of the State to make ample provision for the education of all children..."

Article IX, Section 1 - one State's constitution. What does yours say?

Dear Troubleshooters,

    My 7 year old is deaf and blind and adorable!  I've learned everything I could about the special education laws, successfully suing my local school district and state for their neglect of my son.   Now in his new school, he has had an excellent therapeutic educational program.  Suddenly,  I was notified by his teachers that although they have recommended a specialist in tactile sign language, a school official notified them there was no money.  At the Individual Educational Program review [I.E.P.], after everyone agreed Donny needed to be taught tactile sign, I asked how much this special teacher would cost.  When they informed us of the cost,  I told them Donny's devoted grandmother is very well- to-do and would be happy to pay that money for the specialist.   Everyone at the I.E.P. was stunned sending, the attending administrator out of the room.   Returning a few minutes later, he announced  that he had found the money after all for Donny's program.

     Creative Advocate

Dear Advocate Supreme,   

    Of course it would have been illegal to deny your son a well documented needed program.  But what parent dares to call the school officials bluff.  I'll bet those teachers love you, too. But the best of your work is that now you are using your knowledge and skill for other children besides your son, and teaching fellow parents how to advocate for their own.  

    The Troubleshooters

            THE CHAIN REACTION AT WORK 

Dear Troubleshooters,

My nine year old has a friend whose 2 year old brother, Sammy, was just diagnosed with autism. Both parents are struggling young doctors, still his caseworker made the mom believe the highly funded, well organized and supposedly easily accessible, birth to three program couldn't provide her son with services for 6 months. After I straightened that out with a super Regional Director, the mother was told by a service director anything over what was offered her son, she would have to pay for  through her insurance.  I put the mom in touch with a parent leader and the internet birth to three website, both confirmed that needed services are provided  if the insurance company denies therapy, etc.! Then the same caseworker, Miss Information, told her no respite because of a lawsuit against the state's waiting lists, during which time, no services would be provided. Not true. The lawsuit is mainly about community services for adults coming out of institutions/nursing homes.  All advocates should be demanding it not be used as an excuse to deny birth to 3 services. But maybe these torturous lies to new parents are good, after all. This mother now is committed to helping other parents, joining in with a top pre-school parent-advocate for training and partnership. And Sammy is going to be our research model for the best of early intervention services that elected officials say is their top priority, but who still allow their budget officials to withhold services.

Recruiting Advocate

Update:  12/01  Now 3 years old, Sammy  was accepted in a research program which also provided  2   trained Applied Behavioral Analysis (ABA) therapists who come to his home daily; his mother got his school district to pay for an ABA University pre-school, while parent advocates connected both his mother and father to doctors who are showing them how to use tests,  diets and supplements to individualize and maximize a good  health regimen.  His progress in the last few months has been phenomenal.  He and his parents were featured on a PBS Scientific America episode hosted by Alan Alda.  But the taping was done BEFORE full implementation of Sammy's new educational & medical therapies and before his stunning successes.

  The lesson learned from this experience is that  these early intervention programs so needed  for babies and toddlers, and available in every state in the Union, only came to this child and his sophisticated parents because of advocates who brought in other advocates who led them through the systems.  The doctor mother plans to enter law school and join another parent advocate open a family law center privately funded. 

Update: 10/04 - Sammy is now 5 1/2, has over 100 words from an ABA program, skis freely, calms himself with yoga, fights with his sisters, takes out a piece of ham, questioning why his drama queen sister is called a "ham".  His mom and dad work closely with the public school teachers, their fellow parents,  and several autism organizations.  Sammy and family stay close to his advocate, winning an out-of-court retro-active waiver for in-home therapy aides.  Early, steady in-home support services plus scientific educational programs will strengthen Sammy and his family.  Win-Win for All.                

Dear Advocate,

You are the best! - attracting and empowering parents, as you hook them up with each other and so goes the Chain Reaction.

None of us does it alone.

The TS

P.S.  The lawsuit filed by the ARC has been settled, but advocates are investigating the unconscionable acts of denying early intervention programs during the settlement talks.

Note:  Update: 10/04 - The state (Washington) changed its so-called mind, and continues to appeal court decisions favoring plaintiffs in this suit.  Last judge decided not a "class" (those equally eligible people denied full community services), so the injured parties will appeal to a higher court.  Years go by, suffering denials continue, and tax monies are wasted.  But eventually we shall overcome!   See http://www.seattledisabilitylaw.com/news.html for more complete understanding of this lawsuit.

Job Skills WORK

Dear Troubleshooters:

Every year when I.E.P. time comes up for my son, I have to fight for rights within the school district. This year the battle will center on vocational training. I approached an employer and found a job coach. for. Jeremy who is now working 3 days a week, for 2 and one half hours . .

18 year old Jeremy's annual I.E.P. review is coming up soon. I am requesting that the district keep him on his present job this summer (as a summer school program) with job coach supervision. I have already been told through the grape vine that the district refuses to keep kids working with staff this summer. Where can we turn for help?.

-Parents together for Jeremy

Dear Parents,

Never "ask" your school officials or any public servants for what you know is due your son. Check vocational rules with your Regional federal office of Special Education, then make a complete vocational plan for your son before you go to the I.E.P.. Notify your state legislators of your problem with the school district. with a copy to the chair of the State Education Committees (Senate & House). Your elected officials love vocational programs. When the I.E.P. meeting takes place be sure you pack it with Jeremy power. It's a must for you and your husband, perhaps an older sibling dedicated to his/her brother, the job coach and even the employer. Your son deserves an entourage. And remember he only has three more years (until 21) to become job skilled and as independent as possible.

Finally, go into that meeting with your written plan and assume that everyone is going to do just what your son needs. No negative thoughts and know that you his mother and father are partners with your teachers and school officials.. Your son might come to his own I.E.P., if you know he can represent himself. Have fun and let us know how it turns out.

The Troubleshooters

P.S.  Make an appointment at your local Social Security office and ask to speak to someone about how to work with your school district on a subsidized work program for your son in connection with his school.

a Friend In Deed

Dear Troubleshooters,

I have this problem. Could you help me out?  I have a friend who has a Big Problem. Her name is Julia and we're both 9 years old. Her problem is that her left side doesn't work anymore. Could you make her feel better? Or tell me how I could help make her better?

Sincerely, Her friend

Dear Friend,

You already have given Julia the best of all gifts - a loyal and caring friend. You are part of a new generation of integrating students who understand the human and civil rights movement of their fellow students with disabilities. Julia is a performer with you in a prestigious girls choir where everyone hears and sees her talents first and her mild cerebral palsy as a minor issue. Congratulations on completing your integration.

P.S. Read on for some new information on cerebral palsy.

The Troubleshooters

 Never give up - Research the Dream

Dear Troubleshooters,

Our 6 year old granddaughter has cerebral palsy. Does everyone just have to accept that? It seems there is research or treatments for all other disorders and diseases.. We wonder - if research monies had been spent on cerebral palsy like they have on cancer, wouldn't we have some kind of curative treatment by now? Do you know of anyone who has ever been cured of cerebral palsy?

Concerned Grandparents

Dear Grandparents,
     Over twenty years ago, we fought insurance companies and won to get payment for an operation implanting a stimulator which lessened spasticity . After the implant, the two children we represented had more and more lessening of their spasticity - well worth the $10,000 cost in the 70' s... I remember it was only effective for certain types of cerebral palsy.
     Support the parents at a meeting with the child's neuro-muscular specialist. In the meantime, encourage them to look up on the internet everything they can find on cerebral palsy and your granddaughter's particular type. Ask about Botulinum Toxin (BOTOX), which is a new medical treatment for spasticity . It's about time children and adults with developmental disabilities got their share of applied medical research where they become partners with researchers as treatments develop.
.The TS

Update:'05- We hear nothing but movie stars using Botox! Anyone helping with cp??????