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Contact Person: Mike Coonan 850 478 2558 mikecoonan@cox.net

LEFT BEHIND IN FLORIDA


Letters to Left Behind In Florida by Parents on the Wait List
1) Hi Mike----I am so glad you are doing something about this cause. Our son, is 22yrs old and last year went to Emerald Coast (Pelican's Nest) on 9 mile road. He really misses it. He is very bored at home. He is blind and mentally handicapped and loves to go to school. If we didn't live up in Century, I would try and take him sometimes but I know he couldn't go much since it is over 30 dollars a day to go. I am ready to help you any way I can. Just let me know. Thanks for doing something for our children!!

2) Dear Mike I have a five year old with autism who has been on the waiting list since the week he was diagnosed. (3 years ago) During this time, we have gone the distance by ourselves. We have had to scramble and figure out for ourselves what …….. needed. ……….. was a cuddly and happy baby that was very verbal. (more so than three brothers) After the time that he had his 18 month shots, he began banging his head, grunting and withdrawing. Even though anyone that knew ……….. could tell that he had taken a drastic change in personality and functioning level, it was unreal what we had to go to to get a proper diagnosis.We took him to USA. Once we got hooked up with the Early Learning Coalition things got better. However, we had to discover this entity on our own. We were not referred. ……….is still in Speech and Occupational therapy and has come a long way. Autism is so misunderstood. A waiting list for case managers and services is ludicrous. If someone had a disease, I would like to think they would get help immediately. ………….is truly a miracle and because of early intervention he has thrived. However, not everyone has my background and would have been able to get the services that I discovered because they wouldn't have known how to maneuver the system. (I'm sure many children that are eligible for the waiting list are not even on it - I was told not to even get on the list, that it was not worth my time) Thanks, I live in Santa Rosa County.


3) Dear Mike My son, has been on the 'wait list' for 3 1/2 years. He has CDG, Congenital Disorders of Glycosylation which is a neuro-muscular disorder. ….. cannot walk or talk; needs assistance with eating, bathing and going to the bathroom. He has been to the emergency room twice in the last 2 years with seizures which are described as "stroke-like episodes."

My son and I live alone and I must work to support us. I am 57 and have Lupus, ADD and Depression. With ……. weighing almost as much as I, his care is undermining my health, physically and emotionally.

I'm considering a residential placement for him; and also fear what will happen to him when I'm gone.

4) Dear Mike I have a 24 year old daughter, with Rett Syndrome. Its a pretty severe case, she cannot do for herself, she is non verbal, incontinent, both physically and mentally disabled. I am her sole caregiver and am fortunate enough to have a husband who is able to provide for us. We have only been in Florida for four years. While we had many services available in California, I am very disappointed with lack of services here. When we first arrived my daughter went to "school" at the Northwest Florida United Cerebral Palsy Center. After about 6 months, I felt it wasn't near what I would have liked it to be. She left at 6:00am and would return at approximately 5:00pm. Most of that time was spent sitting on the bus, I couldn't justify sending her there when she would come home barely able to move from sitting so long in her wheelchair. I wanted to find another place for her to go at least 2 or 3 times a week to get her out of the house. Also, when I was planning on going back to CA for a short visit last summer. I called the social worker who is assigned to her case to get referrals of where I might be able to have her either stay or have a nurse come in to stay with her. (she was having these crying spells that i didn't want to try the airlines with) The answer was very rudely said, they don't provide that nor have any financial assistance. I wanted to ask her what her job actually was, because I wanted to know what they get paid to do, we get absolutely nothing from them. We ended up taking her and I'm really glad we did she only cried a little and the trip went well. Needless to say, I am more than happy to be of whatever assistance I can be. I applaud you in taking up this much needed agenda. Thank you

5) Dear Mike My son ……… (soon to be 24) has a developmental disability. Daily I transport him to Horizons an organization for adults with disabilities and he is part of a work crew that helps to clean up local public parks. He too is on the waiting list and has been since 4/29/2003. My wife and I provide his transportation to and from Horizon's and pay for him to attend we would rather have him out in society than staying home alone which he is perfectly capable of doing. We are one of the few private pay clients that they have. He does receive a paycheck usually no more than $20.00 weekly for his work with the crew. That $20 does not even come close to offsetting the cost we have for him to be a part of that organization. We are fortunate that we can afford to do so. By the way, when it was discovered by some state agency that he was receiving the meager paycheck they declared him ineligible to receive his food stamps (which were $60.00 a month). The whole system is a farce. Those who really need assistance can't get any. Please include me in any further correspondence and I would be willing to fight for the cause of what is right for persons with disabilities.

I have contacted Senator Don Gaetz and Speaker of the House Ray Sansom about this situation approx. 6 months ago

6) Dear Mike About 5 years ago when I was checking out areas to live in Florida , someone at a program in Coral Gables told us not to move down here. Another person in the Panhandle region told us that of course there were services. I should have listened to the first person who told the truth. My husband, our son, and I moved down here about 4 years ago. ……….. has been part of a job coach program but has not been contacted since this past March. He did hold gainful employment for a short time but most of his 4 years down here have been spent at home, going out with mom and dad. What 38 year old man looks forward to that. Florida is good about mandating standards but that is it. My husband and I disagree about a state income tax which funds programs in other states. I do worry about our son when we should become unable to care for him. He and we do not have the resources to fund an ALF or other arrangement. I've looked into some other states. Perhaps if some programs could be started, it would provide a way to help fund the services and would provide employment for people. Good luck and do contact me again. My husband is not a joiner type, but does care about ……...

7) Dear Mike We have just returned from holiday travel and finally going through all the mail that has accumulated here. I read with interest your letter about uniting to get our children off the Waiting List. My developmentally delayed daughter, was placed on the list in middle school. She is now 21 and graduated from high school with a special diploma and no services or job prospects. Now she wants to know "what do I do now, Mom"?

You can count on my husband and me to support a united effort to get our adult children the services they need.

8) Dear Mike I received your letter and want to let you know I agree with you about standing together. We have been on the list for 7 years and the last info we got say the same thing about 2011 or 2012. Let me know what will be the next step, also I truly hope you are getting a great response from others too .

9) Dear Mike As parents of children/young adults with disabilities its very ahrd to see our children struggle. The waiting list and other resources has been long for more then ten years with APD.

I am not happy with our local APD agency at all. They have told me for months that there is not enough monies. Your letter is very lenghty, but has a point. I would send out another one with a survey of how many parents can attend a meeting - many work long hours and are unable to make it during the week or some schedule their meetings during the work week that none of us can attend.

10) Dear, dear, dear Mike, I was so happy to get your letter. I 'm also very frustrated with the State of Florida . This is a very good thing you're, or rather we, are doing.
Not only are the legislators with holding their funding, but the matching contribution from the federal level.
I'll give a brief story - let me know if it should include more detail. God Bless you and yours.
11) Dear Mike I received your letter from my Daughters school today - I am not familiar with the APD program, but am willing to help in anyway possible. I am a single Mother of a disabled child. My Daughter was diagnosed with Cerebral Palsy in 06' however we are now looking into Angelman syndrome. As I am sure you know, this is a long process. I am learning about what services the state of Florida provides in situations such as this. If there is anything that I can do to help or, if you have any more information on what is available please contact me


12) Dear Mike I am the caretaker for my 19 year old niece. She has been on the waiting list since March of 2004. I understand you have been working to create a place for discussion and organization for those who are on the wait list. Please add us to your list and let me know if you have any questions.

13) Dear Mike I figured it was about time I give you all a little information about
my daughter so you know how I fit in this group. ……. was born in 1980, three months premature. She weighed a pound and a half at birth. She was on a respirator for four months, once off she continued to have set-backs with pneumonia and influenza. Her total stay in the NICU in Columbia, MO was 10 months. She was the University's first premie of such a low birth weight to survive. We were aware that she may have developmental delays, but it was not until Christina was about two years old when I began the question the doctors about her delays in language and slow development in walking. I was finally told that they were hesitant to "label" her. As much as I appreciated their concern, I also realized that without such a "label" she would not receive the
therapies and special services necessary.

After the appropriate testing was done, it was determined that ………. was developmentally disabled and suffered from mild spastic cerebral palsy as a result of the difficult task of properly regulating her oxygen, all stemming from her prematurity. Over
concentration of oxygen can be just as damaging as not enough oxygen. It was believed that the cerebral palsy & eye damage came from too much oxygen. She also was a patient with Shriner's Children's Hospital in St. Louis where she started with leg braces, then had
surgery a couple of times to help relieve some of the spasicity in her legs.

I enrolled ……………… in a special school for pre-K children; I had to pay, but it was well worth the cost. After she was eligible for services under the educational system she was placed in a state school with re-evaluations every three years. This was not a good
environment for her; the other children would bite her or act out agressively, which caused …………….. to also develop unacceptable behaviors. Once I had moved to a different school district and her three years was up, she was placed in a regular elementary school and mainstreamed into regular classrooms whenever possible. This continued through high school.

After …….had met her academic abilities, the focus moved to socialization, job skills and life skills. During the junior year and half the senior year she was allowed to help in the school office; during the last semester of her senior year she was in a work program
where she attended classes half the day, and went to a job at the sheltered workshop for the other half. She loved having a job!

After graduation ……….continued to work, riding the Handi-Wheels bus to and from work. She was self-confident, eager to work, had friends and was wanting to move into her own apartment. In Missouri she could have moved into a semi-independent group home close to her job. She would have needed help with shopping, finances and such, but
there would have been a 24/7 staff for that, plus I would have been
able to help her as well.

The following year my husband retired and our plan was to move to Florida, which we did. Unfortunately Florida has had nothing to offer for my daughter. Now, my daughter is on a kidney transplant list and she needs dialysis each night, so it would be impossible for
me to help her find a different living situation at this time, but after she does have a transplant, I feel she needs something more to look forward to besides sitting at home watching reruns on television.

……….. can use the microwave, does her own laundry, takes care of her medications, and can do many other domestic tasks. She is shy until she meets someone a couple of times; she is very self conscious of her speech. She likes to read, especially the local newspaper. If that paper isn't in the drive each morning her whole day is a wash!

………. as we call her, has taught me many lessons through the years, and I hope that in some way our joining forces will give something back to her and to all the children and young adults who have so much to offer this world.

14) Dear Mike I am a member of the Family Care Council. I am also a parent of a child with a disability who is on the wait list. I would like to join your group and assist you any way I can to further this issue.

Thank you for starting this group - it is very necessary and I believe that it will become huge! Take Care and Happy Holidays from Flagler County .
15) Dear Mike I have 19 year old son who was not diagnosed with autism until he was nearly 17. He was diagnosed with a smattering of other things from 5 on but I think it had to do with how autism was diagnosed a decade ago. At 16 he was diagnsoed with
myotonic dystrophy - which is neuro- muscular and degenerative. A recent study in Europe showed 48% of those children with myotonic dystrophy also had autism. They are thinking autism stems from an underlying genetic disorder and when you find that, you know why the autism is there. I know, there is plenty of controversy over the why's
and causes.

16) Dear Mike I am in Escambia County. Thank you for the welcome.
I am not very community/issue active. Mainly cause I am not a very outgoing personality but especially being a now single mother of two special-need children, who also home-schools both, and having no immediate family backup nor help- my time is totally consumed in day-to-day life.

Having my son recieve services would be a giant help to me in many areas. I was told by the Agency that he was approaching the edge of the waiting list for the 2003 applicants but that since they are not accepting ANY new clients it could still be YEARS before he was put on the waiver. At a few points in our wait, times have gotten extremely difficult for me in caring for him by myself- at which point I would ask again for HELP! Only to be told I would have to sign a statement saying if I did not recieve gov. intervention that I would no longer be able to care for my son in my home...(abandon/reject him to institutional care) or if my ability to care for him or have him in my home involved abuse issues of him or myself or someone in our home because of him. Well, needless to say none of these statements held any truth, I would certainly rather keel over than to abandon my son to an institution!! Years ago, while sick with the flu, I had to literally crawl across the floor, dragging him along on a towel to get him from room to room in taking care of him, with NOBODY to help me for being so sick I literally could not stand to walk... A person should not have to resort to rejecting their own child in order to recieve help when circumstances clearly indicate that they should in all humane reason be given some help. That clause for emergency assistance causes tremendous red flags to go off where the Agency and government are concerned.

Our local agency, via our case worker, has given some financial assistances over the past few years to help with such things as diapers, and special dietary needs for my son. Being on a fixed income, this help has been a huge blessing. I know the local people involved do have caring, concerned hearts for clients and potential clients but when the higher-ups don't have to live the life or see it, it is I am quite sure easy to dismiss the need.

If I can be of any help as a counted party, I would be glad to do what I can.
Thanks,


17) Dear Mike I had my daughter at Scared Heart hospital in Pensacola. I have been through alot with …….. since she was born. I knew something was wrong when she was born she never cried. She also slept through the night since I brought her home. Her father has nothing to do with us at all except to pay his child support 265 a month which we all know is not much when it comes to a child of special needs. I was working for …….. for 18 months and was laid off when ……… was diagnosed with autism so I made the choice to go back to school have been in school ever since. My greatest goal is to open a special needs daycare in Okaloosa county and I am also working on a book calling it ……. surviving autism. I may not be the wisest person in the world but I do know that ……….. is my greatest accomplishment.
Thank you for your time

18) I am a single mother of an autistic little girl, ……….. When she was diagnosed with autism I did everything (I thought) possible for my daughter to get the proper care. She has been on the waiting list for APD for many years for respite care and she is nine now and becoming better everyday with her autism. She use to be severe autistic and now she has been doing so well that she is mild to moderate autistic. But yet again I can not take her into public or restruants, etc. She is such a handful. I feel that what you all are doing to better APD will be a long and rough road but hopefully something will come of it because I have been raising my daughter alone for nine years now with no help from the system that is suppose to work for our children.
Thank you for your time.
19) Dear Mike I have a 5 1/2 year old son with Autism. We joined the med waiver
waiting list/do not serve list on his third birthday. Of course we are still waiting. Some of the services that they offer probably won't even be needed by the time he gets to the top of the list at the current rate.

Thanks for all you are doing Mike! Let me know what I can do.

20) Dear Mike I received an email re: the Waiver Services Waiting List through the Autism Society via Susan Byram. My son age 11 1/2 has been on the waiting list since Oct. 2003. I am interested in participating in your endeavor to change the status of this unending wait.
Thanks,
21) Dear Mike As the chairperson of our local FCC, I publish a newsletter that goes out to all of the folks in area 12, about 1,700 families.Seems to me that I should be putting something in there to let them know about this group. what would you like me to say. We have about 500 families on the wait-list.I am just about ready to publish so please respond promptly.
Thanks


22) Dear Mike We are in Escambia county, Century to be exact. I am haunted by a story I about a disabled young man in his twenties. No longer in the school system, being cared for by his mother. The story went that the neighbors would hear him crying and screaming especially at night. When he was finally checked on by a family member I believe, he was dead. The mother had left him alone for weeks. He was cold, wet unable to do for himself starved. I am still moved to tears and you would think someone would have been outraged enough to act then. It just goes to show how much they really dont care about our kids.


I am willing to do what I can to help our cause just dont know where to begin... I am a stay at home Mom at the moment besides my daughter ………. I have a 13 year old …….

23) Dear Mike I just received your letter today and it was a great enjoyment reading what you have in mind to help. And yes I am so in agreement with you on the lack of services we have for our loved ones that is disabled. My name is …………. and I am a single mother of an autistic little girl her name is……. She was diagnosed with autism when she was in pre school at Colmbs in Fort Walton Beach, Florida. She was about 4 years old and I immediately put her on the list for respite care and several other things through the agency with persons with disabilities and all we have gotten was a one time deal of ABA therapy for her when she was 7 (i think). ……. is now 9 years old and doing good at this point but I feel that she could be better if she had more help with her autism. ABA therapy should be a on going process I feel and should not be just used for a month and then ok this is it. Change is not good for children with autism and routines are needed to help them cope in the real world, but there is always something that happens to send a wrench into that routine that sends my daughter into a worlwind and takes me awhile to get her out of it. I have been raising her alone all these years alone. I have no employment. I am a part time student and it is very hard for me just myself coping with my daughter's needs. When she is good she is an angel but when she is bad oh my goodness.

I hope that this little bit has let you understand what I am going through and I know that I am not alone. Thank you so much for you.


24) Greetings Mike--glad to receive your letter forwarded by our local autism society in Okaloosa County. I am a father of a 9 year old son with Asperger's syndrome, currently in elementary school with an IEP in place--as I read your story I was struck again by how many people suffer with this situation with no forum to speak--so I'm in for whatever
25) We are the parents of a 22 year old young man with Down Syndrome. Because we just moved to Florida 3 years ago, we are one of the 20,000 families on the waiting list. Please add us to your email list. Georgia was quite successful with their "unlock the waiting list campaign." Because a picture is worth a 1000 words, I think it might be powerful to make a LARGE poster with individual pictures of all of the people on the waiting list. Please let us know how we can help you.
Palm Coast, FL

Dear Parents on APD's Waiting List Thanks so much for your email. I couldn't agree more with your frustration about ADP and their waiting list. I joined other senators in approving funds for 82 additional personnel to perform assessments in order to reduce the waiting list and triage clients based on their needs. Still it is taking far too long. According to testimony from the state APD director there are thousands of people on the waiting list who shouldn't be there and, worst of all, clients come off the list and are served based on when they got on the list not why. I have stated publicly that APD has a history of being the worst managed agency in state govt. As you may know this agency doesn't work for the legislature. It is an executive dept agency. However, I am still doing all I can to put pressure on those who can affect changes. Respectfully. Don Gaetz Senator
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