Do parents of children with disabilities feel there is a lack of support available to them?

Question

I am interested in the opinions of the parents of disabled children or children with learning disabilities as to whether they feel there is a good range of support available to them, should they want it.

Answer 1

As a Youth and Disability support worker, I know there are services available just not enough, some service providers are excellent, and others have a long way to go. Sadly some families are unaware of the services available to them, or they have not been told about them, financial support is far and between, making it difficult for families to afford the most basic things, needed for their child, e.g disposable nappies/diapers, and mobility aides.

I think parents should be given a list of services, what the service offer and how they may assist the family, including any costs, and criteria for access or support. (I have recently created a such a service list for my local area).

Access to counseling and respite is a must, especially for those dealing with significant disabilities, also access to home support services.

The Governments need to think about just how much families do, to provide and support a disabled family member, and how much they sacrifice to keep them at home, instead of putting them into care, which would cost the Government heaps to run and facilitate.


Our daughter has ADHD, ODD and Dyslexia, she was not diagnosed until nearly 10, yet she had struggled through her early years of school. I was told something was wrong but they would not do anything, so I had her tested, ADHD and ODD were not something we had thought of, partly because she was rarely naughty at school, and I had a very ridged routine, as I found she would not cope or function with out a routine.

I refused to tell the teachers about the ADHD & ODD at collage because some teachers automatically would label her as being naughty and not support her. Very few teacher knew what dyslexia was, so they were given an education about what dyslexia was and how it effects my daughter, this would also include class room strategies. I would ask for a meeting at the beginning of the year, the few teachers who would turn up, were usually the teachers who would do their up most to support our daughter.

Thankfully she gain a good education, and is a qualified Disability support worker.

Answer 2

No, no, no. There is definitely a lack of support available. I have two children with learning disabilities, and I've hit major roadblocks getting help, even thru the schools. I've tried talking to the kids doctors to request evaluations, etc. The doctor refers me to the school for support, the public school refers me back to the doctors for support. When I have teacher conferences, the teachers are usually rushed and meetings rarely last more than 10 or 15 minutes. I'm so frustrated I could scream.

When my twins were younger (yes I have two with disabilities) it was easier to get help for them when they were toddlers. There were early intervention programs, my toddlers received physical therapy, occupational therapy, and speech therapy right in my home twice a week. Now that they're teens, there is very little in the way of a support system available.

And if you live in a rural area, and your kids are on Medicaid, good luck finding a *decent* doctor that accepts the Medicaid.

Answer 3

First off - disabled children includes children with learning disabilities.

No there is not a good range of support.

SSI is a crappy program that provides very limited medical care - if you can find doctors who will accept it.

Inclusive education is a right to children as the most least restrictive environment and yet you have to fight tooth and nail to get it.

Answer 4

No there is no support at all. It's hard i have a son with a learning disability, and he is yelled at more than helped. He comes home, and all he says to me is mommy they think I'm not trying but it's just too hard. I will be setting up a conference because I've had it. If they won't listen to me then I will get the media involved.

Answer 5

Yes AND no.... I have found a great deal of support from other parents with children with disabilities. They are the EXPERTS and are often a wealth of information of where to go and how to get things for your child. As far as support from the "professionals" (i.e. doctors, teachers, local and state workers etc.)... no they are often very uneducated about services and support for children with disabilities.

Answer 6

Yes there is a lack of support, I had to fight for my son in school because they just want to push them through the system.
I had to fight the health care system to get what my son needed to make his life better.
I had to fight the insurance company to get them to pay for the medical needs my son needed.
Then when they reach the age of 22 the Medicaid system says they don't need a dentist anymore.
Then when they live in their own apartment they want to monitor your income so that if you have enough money to buy yourself something nice they raise your rent.
Social Security that is a joke in itself, the will never let you earn enough money that you can enjoy life, like go to school.
If you want to work, or get married then you loss money from your check. If you require attendant care to assist you if you want to work, they say no.
Oh, if you as a parent die and leave your child money then they can loss their check, attendant care because they lose their Medicaid.
So is their a lack of support? You tell me.
Have a great day.

Answer 7

I have a 5-year-old that's developmentally delayed (I hesitate to say retarded because I think he's smart, he has an excellent memory--it's just getting him to express it). He goes to all-day, special-ed kindergarten, and he has occupational therapy and speech therapy. His class is what's known as a multiple-disability class.

In our district, we have Early Intervention for children up to age 3, and after that it's through the school system.

Answer 8

i fought for my sign since preschool ever grade every six month meetings, extra reading help tutor from the school under the fed disabled child act or something like that, when he got to high school same routine. all those meeting were meant to placate me from following more closely what was going on. i thought i was doing a good job. so even if you feel like it is support trust yourself, join a group or start your own.

Answer 9

there are NO support groups for our family,, my son has autism,, and it's a nightmare,, one night I got so upset I grabbed my other son by the arm out of anger,, and I called child protective service on myself,, because there was no one else I could call for help,, so now I have a record of abuse. wich they told me I DID NOT ABUSE my child, It was completly out of caractor for me to do so.
so hear I am , still struggling.with no help.