Last Nights Research--- State Homebound Rule by State

Homebound Rule by State to State Comparison

Mom's Mission Organizing 20 Years Worth of IEP's

Today's Mission Organizing 20 Years of IEP's.

I am digging through my Rubbermaid Totes putting Becca's educational records in chronological order so I can document her history of school failure and school absences. I think I need a professional strength hole punch as some of these IEP's are too large.

Frustration---Transition and What if She's Not Ready

One of my least favorite parts of being of living in the special needs world is always having to fight for things.

When she was tiny, most everything she needed was covered by some form of insurance, her Medicaid or her waiver. But the years have gone by and today it seems like everything she needs is a battle.

We couldn't have moved at a worse time..Becca was turning 17. We had moved to Michigan 10 years earlier. It was a challenge to reestablish care for the dozen or more specialists who followed Becca for a multitude of medical issues, but nothing compares to moving a complex 17 year old to a new place just when she is reaching the magic age of majority.

I am not a novice at special needs medical care 20 years of living with Becca and my other special kiddos, I am a master of RED Tape. These past 3 years of dealing with her special needs while at transition age has given me "fits". I can't believe how bad it is to navigate.

There is an awareness in the special needs medical world, that we need to do better. There are many more survivor kids who are now because of medical technology are reaching adulthood, and the medical world is now having to figure out how to handle them without them falling through the cracks.

Becca is unique, anyone who "see's" Becca knows that she is not yet physically an adult. Part of her Noonan Syndrome is that she has delayed maturation, not just socially and psychologically, but physicially. Part of Noonan Syndrome is that she has delayed puberty.
But insurance company says she is an adult. They see the magic age on her paper and judge accordingly.

Our insurance company says she is an adult, but the medical community says she still needs to be in pediatrics. Compound the fact our managed care provider has few pediatric doctors on its roles, I have to get approval to go out of network.

The insurance company says she needs to see their in network adult doctors. They say they can "manage" her care with their adult specialists. I have gone that route several times and found being told by one doctor "that I was wasting his time" as she is not someone he could manage. I had been told I had to go there and then faulted because we were in the wrong place. Another doctor treated her as an adult, mismanaging her medical care. Causing real harm that will last a lifetime because of missed opportunity.

I have been fighting for now nearly three years for Becca to get to pediatric endocrinology. I had one an appeal and got here there once, and we barely got started with the doctor when the insurance company wouldn't let us go back. She had been on growth hormone, not just for size, but to help with bone development. But now three years later she is still not on, we are still fighting for care with an endocrinologist.

Becca only began developing less than two years ago, her body is behind. We have been fighting the insurance company for endocrinology during the window where we still can make a difference for Becca long term.

Because of the insurance companies and the medical groups war with the competition (they do not want to send their money to their competitor) and Becca's paper age... she is going to face life-long repercussions. Bone loss...severe osteoporosis...brittle bones of a 80 year old at 20.

When Becca was seen by the Pediatric Cardiologist...he discovered by her chest x-ray her transparent thin bones. The family practice doctor sent her for a bone dexascan and when compared to the one from nearly three years ago, she has lost ground. Even with this knowledge the insurance company still "DENIED" her to go to the pediatric endocrine specialist after two appeals.

Yesterday I received a phone call from the nurse case manager at the Health Plan asking me if I appealed their decision. I hadn't...procrastination...the holidays...just not wanting to ruin my day...rehashing the mismanagement of Becca's transition medical care.

This person has been involved in Becca's medical fiasco's helping mitigate some of them and showing me how to manuveur through the managed care doors to "fix" system glitches that Becca seems to fall into everytime we need something. But she also had news to share... She is retiring. I spent three years advocating and training this person about Becca's complex needs, I get to start again.

She is leaving..Friday. I need to get the appeal in by tomorrow so she can make sure it gets attention. I had other plans, but dropped everything to get it done.

I copied both dexascans, copied the insurance company denials from over the past three years, I copied medical abstracts "proving that there is delayed maturation and puberty in Noonan syndrome" and the FDA approval from 2007 for growth hormone use in Noonan syndrome and why it is so important and wrote my appeal letter.

But even with that I knew the insurance company still did not see Becca. I attached two pictures of our Tiny Titan, one of her with her siblings, three inches below my daughter-in-laws chin and her tall brothers and one of her in her swimsuit and tank.

They say a picture is a thousand words...




Doctors appeals have been denied, they see Becca for her age not her development....


Maybe this will get their attention.

Becca and her "Animals"

Which is more socially acceptable for a 19 year old with autism and anxiety who has to carry something with to be less anxious?








OR

Becca's Service Dog Morgan--Can't Go to School, but Can Go Everywhere Else?

Becca has decided to "attend" drivers training this summer. She has NEVER before made it through 15 days of school without getting sick, but we have never tried in the summer. She was never given the opportunity to have extended school year even though missing l/2 the year due to illness, headaches or doctor appointments.

Becca has carried Morgan the 5 pound Morkie "Yorkshire Terrier and Maltese" into restaurants on airplanes, is welcomed with treats at multiple retail establishments, and is a frequent shopper at both Walmart and Target along with everywhere Becca travels.

Until now... the school will not honor the paperwork and add Morgan as a supplimentary aid or even on her "list of things Becca needs to be successful" through her IEP.

When asked if Morgan can attend the State Technical Schools sponsored Drivers Training class, Becca was told "NO", and told to bring something with but not alive. They are asking us to make her regress and start carrying the stuffed animal that took me years to break.

Morgan is in a carry case, she sits quietly, patiently when working (in her case) and when out her job is to be friendly to enable Becca to converse socially with anyone who can't resist the tiny social puppy.

The ADA has rules on service animals and with the article in the Wisconsin State Journal about Federal Service Dog Rules Becca is filing just another complaint. No one takes her dog away when she needs her most.

Confused? This Makes No Sense.

For the last 7 years of Becca's schooling I have been fighting the schools to follow the recommendations of her Medical Providers. They tell me they only have to "Consider" her medical information and they won't comply with the doctors orders, medical treatment teams recommendations for Becca's Home Instruction instead of heading to school. Least Restrictive Learning Environment for Becca is a place where it is sensory friendly, with someone who will be her paraprofessional "or Coach" as the neuropsych said she would need to be successful.

So for the last years she has faced many semesters without school or little schooling. The district took out all her aids and supports, assistive technology, paraprofessional services, textbooks on CD or computer, her computer reading software, headphones and then even lost the 7 pages of the Technology Evaluation we worked so hard to make happen in Michigan and even the Pages of the Notes of things to help Becca. They claimed they had never seen it before, but they had it buried in their files. They didn't want to see it. They said she didn't need it anymore??????? All her aids and accommodations were removed but someone writing for her or built up pens and pencils. This week they told Becca " isn't it easier if your parents can read for her, write for her, it is much more time consuming to have to do it yourself." What ever happened to help her to be independent, not even more dependent?

We have argued and they won't provide any Occupational therapy, won't provide an autism consultant and transition services. She doesn't need any. With hands that are falling apart, that is the medical worlds problem and it doesn't affect her learning. ????? In fact despite a State and Federal Mandate for transition goals at each IEP, we never get to talk about it only talk about Programming. Programming that will only happen IF she returns to school, despite a Neuropsychological report that states "probably won't be successful in a high school setting".
Her IEP is a joke, it means nothing. It is not FAPE, Not IDEA.

Becca signed up for the Classroom Drivers Training and today I contacted the head of Student Support Services at the Technical College, and they will have to approve her support services BASED ON MEDICAL DOCUMENTATION. The IEP wil help them understand the students challenges, but the MEDICAL DOCUMENTATION is what they need to approve supports for Becca.

They have reading software in the support services, they will accommodate lighting etc. They have transition planning services, but we have to wait to graduate to get there. Our district has kids who have dual enrollment, but when Becca asked if she could take classes from the Technical College, they told her they will consider it and then denied it by not adding it to her IEP.

The schools do not have to follow the American with Disabilities Act, they can do what they want.
They denied Becca a Free and Appropriate Public Education because they can discriminate against her because of her medical and sensory needs. They will not provide the technology but the College will? She should have been trained to use it, for her it is just too late once again.

But she can't take the courses to lead to a career in the medical fields because she has not had the Biology or Chemistry Classes she needs because they took "books on CD" and supports they don't have either course on tape as the books are too old. They have to find a comparable book with appropriate tools if it was written in the IEP, but they took out that she is dyslexic and has visual challenges and needs to have things read to her. Why? Because they will have spend money on her, they may have to "buy her a Biology Curriculum" which is not just some dumbed down curriculum and support her using technology.

Becca starts classroom drivers training and they are trying to accommodate her needs how come the school district will not do the same. I can't wait until she turns 21 1/2 so she can attend the community college, but she has to graduate first which won't happen because they will only give her one credit a semester and this fall only a half.

I love the school district for my kids with Fetal Alcohol Syndrome, I used to make excuses for their failure to school here as she is complicated, but no longer. They are just running down the clock to being rid of her I know their game.

I have not filed complaints, I did not want to go to those lengths, but the special education director has not followed through on what she promised to "look into". We just keep waiting for her to deny so we can appeal. But no longer, the complaints are coming and they will have to answer how they schooled Becca.

The new game, meeting after meeting running down the clock to try to avoid doing anything and not provide anything in writing. Waiting for the clock to run down till Becca is 21 a little over a year away.

What does this leave us with? Becca with no HS Diploma.

News on Seclusion and Restraint

Read the GAO's Report on the Issue of Seclusion and Restraint

Listen to the comments from The Obama Administrations Education Agenda: Sec. Duncan on Seclusion and Restraint

To Find More Articles on the Issue of Seclusion and Restraint


http://edlabor.house.gov/blog/2009/05/news-of-the-day-gao-schools-re.shtml

CNN

USA TODAY

News Story from Georgia

http://www.aboutlawsuits.com/child-abuse-at-schools-and-institutions-linked-to-restraint-3985/

Posting on several google alert articles from the last couple of days