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Cerebral Palsy Family Support TM |
Cerebral Palsy
Family Support Network TM
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Cerebral Palsy Family Support TM |
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When you first find out your child is disabled it
really throws you for a loop. You don't know what to do or where to turn.
You know you have to do something but what and how and where? You feel
helpless and a bit frightened, cause you just don't know anything.
How we dealt with DSHS and DDD and others. Some simple solutions and some strategic defeats. Advocacy for your Child is your major responsibility. Alphabetical listing of most pages on this site: Exceptions will be state and county pages. Some are not linked from this sidebar but from within a pageThe CP Links Page is where you will find most Federal, State and local County pages. My attempt to clarify CP you may find the information provided by NINDS is more specific and detailed There are many different treatments and I only name those I am familiar withHow it is essential to maintain range of motion How it is essential to maintain quality of life What I know through my experience By far not even close to what you should know and Orthotics Again what I know through experience Much more can be had searching the net or talking with doctors and therapists CP LINKS Cerebral Palsy Glossary More Information of CP provided by NINDS Specific Neurological
Disorders My take on the IEP,
IDEA 2004 (Public Law 94-142 & Public Law 101-476), and the 504 plan. IEP overview 504 plan & IDEA Q&A
Parent & Educator Guide of 504 Plan concepts and real life accommodations. Drafted by the OSPI and 5 Puget Sound area School Districts but would be a valuable asset to any fighting for their child's 504 accommodations anywhere U.S.A. IDEA 2004 summary& Washington State Chapter 392-172 WAC
SPED special education and the IEP MEMBER PAGES
Pierce County Events
AMBER'S STORY In the share your story section people like you will post their unique experiences and through what is said you may find you are not alone. You may also find a friend and someone you can relate to. And possibly a way to realize your own goals. Websites created by people who have CP or someone in their family has CP. Net-etiquette applies. All sites are subject to approval. Banners and text allowed on these links. NON CP RELATED All sites are subject to approval. All Non-CP links are text only with a line or two of information of the link posted. Please notify me of any broken links so I can remove or fix them. Join with me in trying to educate the public of CP and other disabilities What motivated me to build this site Direct your comments to Robert. Robert wrote a Science Fiction trilogy while being laid up. It took 4 years to complete and he has for sale Book 1 of the trilogy HERE He is awaiting editing and copyrights on books 2 & 3 before sending them to the publisher. Book 1 can stand alone and is a complete novel of 237 pages and 135,000+ words in PDF format. Making Money Online (or not) Other sites I have or to be more precise the wife has and I take care of.
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A Parents first hand account ofHow we dealt with DSHS and DDD and others. Some simple solutions and some strategic defeats. Advocacy for your Child is your major responsibility.
Fighting the system When you first find out your child is disabled it really throws you for a loop. You don't know what to do or where to turn. You know you have to do something but what and how and where? You feel helpless and a bit frightened, cause you just don't know anything. You're also so emotional you probably are not thinking straight. But like the wife is prone to say "You put your big girl panties on and deal with it." Well I can't say much about the panty part but we did deal with it. As best we could. First we talked with the Doctors who were not really saying much (most likely afraid of a lawsuit) and what they did say went over our heads. So we started researching everything we could about Cerebral Palsy and Left Hemiplegia. Didn't have a computer way back then and not sure it would have been much help as the internet was just a bunch of nerds and the government playing games. We didn't know how to use one anyway. We hit the libraries and talked with any who knew more than us which was just about anyone who had a disabled child or knew of someone who did, and the Therapists. Yea, the Therapists were a wealth of information. Thank God for Therapists. They seldom have the time to do much research of local programs but they are in contact with so many parents that they learn of so many programs. They have been our number 1 source for information and still are. (Of a personal note: Amber has developed a close relationship with each of her Therapists and most have done as much with Amber. She feels comfortable confiding in them and as such they are a release for stress that we as parents could not provide.) We found ways to get Amber services at no cost. Like enrolling her in College programs that dealt with Early Childhood Education at a local Community College or actual Therapy classes at a local 4 year University. We found from the Therapists that 'range of motion' was critical and so we paid for Ballet and Gymnastics which she was never really good at, but gave her exercise and worked on that 'range of motion' thing. These classes through the College and Universities would last a few weeks at most but they were free and yes Amber was a lab rat to them as they learned their profession but it was free Therapy so we couldn't pass it up. And they were always in the market for lab rats each quarter. Unknown to us the Community College had contacted DDD, the States Department of Developmental Disabilities under the control of DSHS, the Department of Social and Health Services. We were not contacted by DDD till over a year later and were shocked they even knew of Amber, as the College never informed us they had talked with them. At least we don't remember them saying so. I was working then and between work and the rentals we did OK. I never thought DDD was available to us as I had in my mind this was for low income and we weren't back then. Turns out DDD is available regardless of income though some things are income driven. A case worker was assigned and they started doing annual reports and told us of programs that were available but most were just parent groups that discussed or rather bitched about the system and how they never got the services they felt they deserved. We got very little from these except for the occasional bit of information of a new contact that we could follow up on. By this time Amber was about 3 years old and we were in the midst of a Lawsuit against the Hospital. As part of the settlement I cannot disclose the name of the Hospital or the amount of the settlement but suffice to say the lawsuit was bleeding us of monies faster than I could make it. Our bank account was hemorrhaging and we found it difficult to continue to pay for services as well as the ever mounting expenses the Lawyer was incurring. I'll speak more of the We decided in the interest of our daughter to stop paying Lawyer expenses and let him carry those costs (at 12% interest) and concentrate our limited resources on Amber. Our insurance was not the best . It paid for up to $5000.00 in Therapy a year. Amber went through that in less than 4 months. She was seeing Physical, Occupational and Speech Therapists at the Hospital's Children's Therapy Unit. We were paying for Ballet and Gymnastics and taking her to various Colleges for free Therapy. We paid out of pocket for additional Therapy to the tune of about $7000.00 a year or whatever we could afford. The bank account was always on tilt, even when I was working a regular job, even more so now than I'm not and just managing my rentals. The Therapists would recommend things that they felt would benefit Amber and we would take these recommendations to DDD who after a bit would always deny them. We started to get Doctors letters to add to the Therapists but still were denied. DDD would have us bring Amber in for evaluations and she was on the roles as an active client but DDD never did anything. Eventually this came to a head and I blew my top. I yelled at all present at one evaluation meeting that it didn't make any sense to me to go through the hassle of DDD when they denied every service or device we asked for. I grabbed up Amber and the wife and we left in disgust. I filed a complaint to DSHS and sent letters to my Congressman at the State level. I eventually was told of how to file a proper complaint and did so. We started receiving respite care services shortly afterwards. Now this care is quite ridiculous in some ways. The premise behind it is that Amber would receive care and Therapy through an organization or individual of our choosing allowing us "time off" for a couple hours a week. They have some formula that they use to decide on just how much care your child is entitled to. Or rather how much 'time off' you are entitled to. DDD pays this person minimum wage for the hours they put in. They have stipulations that have to be met. Like services can only be provided in your home. That the person has to be registered with DDD as a care provider. That the service has to be in some way Physical or Occupational Therapy. That the parent cannot provide these services and be paid but a relative could. We found it was simple to have my mother registered as a care provider. She simply attended a few Therapy sessions at the hospital told DDD she knew what was required and signed up. My mother then would come over and play with Amber using some of the techniques she saw the Therapists use. She collected on the 32 hours a month that Amber was appropriated and my mother used that money to pay for other services we couldn't afford. There was no stipulation of what she do with the money after she earned it. I then resubmitted all my previous demands for items requested with letters from Amber's Neurologist, Pediatrician, several Therapists and workers at the Colleges we had her enrolled in at the time and in some cases other individuals. DDD still denied the claims and I resubmitted them. And I did so several times till DDD caved and agreed to a few things on the list. Not much mind you. Over the 14 years Amber has been on DDD she has received about $200.00 in devices, mostly kitchen gadgets that aide her in performing simple tasks. Most of what we asked for was denied and a lot of the time no good reason was given. The reason they often quoted was "Others would use or benefit from this item so it is not strictly speaking just for Amber, as such we must deny your claim." A load of crap if you ask me. Amber would definitely benefit, all her Doctors and Therapists recommended the items. But filing complaints had no effect on these matters. And with all the money we were spending on essential programs we just couldn't afford these items. I made a jungle gym of sorts we placed in the shop with old mattresses under it incase of a fall. Amber's climbing over under and around increased her 'range of motion'. A friend gave us some real Olympic style parallel bars which added to the contraptions I'd built. The kids had a blast climbing over this stuff. And yes their friends too. But Amber wouldn't play on this unless her friends were involved. So much for DDD's little ditty of 'others will use it'. Damn good thing others did use it as it encouraged Amber to do so as well. DDD has been of such little use I wonder why it even exists. Just another government bureaucracy to bleed the taxpayer. You may find DDD can be of help and I applaud your success as for us they are just a pain in the ass. When Amber was in the 4th grade DDD for no reason just dropped her from their roles. I believe they mentioned there were cutbacks in funding and as Amber was not that disabled she was chosen to be eliminated from the budget. I immediately filed a complaint. While a complaint is being processed they have to continue services. Remember that and always file a complaint through the proper channels within the time specified. Even if you lose you will at least get a few more months services. DDD decided to fight and a Court date was set. By now we had our first computer bought by my in-laws to the tune of $3000.00. They weren't cheap back then. I was able to retrieve a lot of information off the net. I got the qualifications from DDD for eligibility and started going down the list. I contacted Doctors, Therapists, and any who could bear witness to Amber's needs. I started to fill in the blanks, so to speak, to build my case for eligibility. Everything so far was subject to interpretation by the Judge but I had what I considered a solid case. Then I went to the schools and got all their information and on one little piece of paper I struck gold. The Wechsler Intelligence Scale for Children, (WISC-III) given to Amber in the 3rd grade by the Special Education Psychologist at her elementary school. This is an IQ test and she scored a 69. This was more than 2 standard deviations below the norm and this alone made her eligible for DDD services. So even if I didn't win over the Judge with all my other arguments this was LAW and stated in the Revised Code of Washington and was also stated in the eligibility requirements for DDD. I had them right between the crosshairs. I wanted my day in Court. The day before the Court Date at 3:30 in the evening I got a call from some lackey at DDD stating they were dropping the case. No reason given. I'd spent almost 4 months preparing for this battle. Couldn't afford a Lawyer and I had a file folder 5 inches thick. I still have it, right on the shelf behind me, as a reminder to always fight. No matter what. I was so pissed off the next day I called the Judge that was to hear the case and voiced my opinion of DDD and their shenanigans. The Judge listened patiently and said she would look into it as it was a waste of Court resources as well, but I never heard another word on the matter. Amber still receives respite care services to this day though we have never again filed for any other devises or services through DDD. Not that we wouldn't, if we thought it necessary, just we have found the hassle isn't worth the effort. But I encourage you to fight for your child and if you feel it appropriate, submit claims and continue to do so till either they give in or you see that no matter what it is a losing proposition. Don't take 'no' for an answer. Especially the first time around. And this applies to any denial from any person or organization, not just DDD I didn't appeal my denial for application for SSI benefits when I lost my business and couldn't work, and now find I've lost the right to, as any complaint must be filed within 6 months of denial or you lose the right to a hearing on the matter. I later found out Social Security almost always denies the first application. It's just the way they do things. I should have filed a complaint. I didn't. It's done. I'm screwed. Don't you make the same mistake. Especially when it concerns your child. We had Amber in special education classes in Grade School. We didn't want her there, as we wanted her with the general population. But she needed the extra help. We found a compromise with the school to allow her to spend much of her time in regular class and a bit in SPED. Eventually with tutoring by us and Special Education Classes (sped) we were able to get her grades up so that when she went to Middle School she was in regular classes only, with no SPED. What we didn't know was she was being graded more on effort than test scores. We were told by the grade school when she graduated there, that she no longer needed the IEP. OK credit where credit is due. It will be on the list of information links but taken from www.wikipedia.org. In the United States an Individualized Education Program, commonly referred to as an IEP, is mandated by the Individuals with Disabilities Education Act (IDEA). In Canada an equivalent document is called an Individual Education Plan. Don't need anyone screaming 'foul' that I plagiarized something. Anyway the IEP is necessary if you want your child in special education but in regular classes you do not need this. Although you may want them under the 504 plan which allows for special considerations like front row seating, ability to be late to class if getting there on time is a problem, extra time on assignments and tests, verbal instead of written if necessary and many similar accommodations in regular classes. We were told Amber did not need this as she was doing quite well with mostly A's and B's on her report card. She went to Middle School without the IEP or the 504 plan in place. Again I have to reiterate that most of her grades were based on participation not tests. Middle school was no different. Amber loved school. If you'd ask what was her favorite thing in the world to do, she'd say "school and homework". Not your typical kids answer. So she participated and was the teacher's pet in most every class. She graduated middle school with a 3.792 GPA. 4.0 being top at an A and 3.0 being a solid B that's about an A or at worst an A- average in middle school. We were very proud of her achievements especially since we knew she had a 69 on the WISC III in 3rd grade ( anything under 70 is considered mental retardation ) OH yes, we were so very proud of her and ourselves too. All that extra time spent on studying and tutoring had paid off. Or so we thought. She gets into High School and she is placed in a remedial math class. A SPED class. She got an A- in Algebra 1 in the 9th grade. What was up with remedial math? We went to the school with report card in hand knowing some mistake had been made. But no mistake had been made. The District had reviewed her test scores and had decided she wasn't ready for higher math. The Middle School had based her grades on participation and not test scores so now she was unprepared for High School. Amber was devastated. She cried for a week. She hated school and talked of killing herself. Of course we sprang into action right away. It took a few emails and some meetings but we effected change. Quickly what we were able to accomplish. We got her on the 504 plan so she would get extra time and help. We got her math class switched to one still below Algebra and still a remedial class, but one where the curriculum was higher and the teacher had more control of his students which made for a better learning environment, which bolstered her spirits. We posted flyers at local colleges and found her a private tutor that comes in 4 times a week for 2 hour sessions. ( currently $460.00 a month we can ill afford. We will soon be cutting back on the hours) We went to Amazon and bought the Algebra 1, Algebra 2 and the Geometry books she will be using in the future so she could get a leg up so to speak. Got them used so just over $120.00. We would have bought her current class book as well but it was not available and besides she has the one the school provided. Got her to stay after school for extra help from the teachers and got her to join the Key Club which satisfies her community service credit requirements and gives her a social life or at least social interaction with her peers. Joining the Key Club was a suggestion of the VP at the school and we felt it a good one as Amber has no friends or no close friends. We have tried to encourage her to seek out friendships but she has attitude and many are turned off by it. Also her disabilities are a deficit in making friends as most of us can attest that children can be cruel and they pick on those less fortunate than themselves. Peer pressure keeps those who might want to be her friend at arms length. She did eventually quit as none of her peers would talk with her and she felt isolated and depressed. How we accomplished this? We had several meetings with her Counselor and the VP at the High School on how we could best serve Amber's interests. When I didn't feel I was getting what I needed I wrote the District office. When I felt I was being stonewalled I sent out 52 emails to everyone from the Counselor and VP of the school all the way to the Governor of the State, my State Representative and even my Congressman at the Federal level as well as every advocacy group I could find. You will find most listed on the LINKS pages. I filed a formal complaint with the Education Ombudsman office under the Governor. After 16 years I've learned one thing. "If you wait for something to happen it never will. You have to make it happen." And you can quote me on that. We didn't get everything we wanted but Amber feels better about school and is doing quite well again with a B average. It is much harder on her than it was, cause now she really needs to study hard as the scores are based on tests. She does get the occasional failing grade on specific tests but her average is still a B. I expect it might drop to a C in time. I hope not as Amber has plans for her future that include a 4 year University and anything less than a B average will not get her in, but more on this in the Amber's Story pages. This is about as short as I can make this page. There were other fights we have had to face but to add all here would have taken a book. Suffice to say these were the major battles and we were somewhat victorious in most. Just as an update. The Ombudsman's office called 2 months later and said they felt there was enough evidence for them to get involved. That they were taking the case. I explained that it was the middle of the semester and to switch classes now would be difficult for Amber to play catch-up. I was told by the rep I was talking to that they would attempt to make any changes effective at the start of the new semester. When I asked what had provoked their decision I was told her grades. If she had been passed from Algebra 1 with a C or better she should be in Algebra 2 or Geometry not in remedial math. If she wasn't prepared to move on they shouldn't have passed her in the first place. The fact they had meant she was entitled to be in the next course. the fact that she had done so with and A- and a 3.792 GPA was all the more reason to have done so. Keep in mind however that the Ombudsman's office under the Governor can only make suggestions and they have no enforcement capabilities so Amber could very well see nothing come of this. At best we might get her to be able to repeat Algebra 1. It has been a couple weeks and I've heard nothing yet. Update: It has been a year and though I made a couple of calls I have never again heard from the Ombudsman's office nor of anything they might do. Another bureaucratic bunch of bullshit that was just a waste of time. You are you child's best advocate and at times their only advocate. You have to be willing to step up and FIGHT for what you think is right. I wasn't one to speak out much before Amber was born. Content to just let sleeping dogs lay. But today I have a hard time not speaking up, and the wife has had to reign me in quite a few times. Those of you having a disabled child know what I'm talking about. Those years of being shy or introverted slip away pretty fast when it's your child's future that's at stake. I've said it before I'll say it again. You are your child's best advocate. Fight for what you think is right and don't take no for an answer. EVER!!!
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