What is the largest need in the special needs community?

[Guest Sparrow12]

Hello,

 

I am recent college grad and am doing some research on the largest needs in the community of special needs children. I'd love any feedback on what you feel your child lacks due to their circumstances...in their local community, school or nationally.

 

What is it that needs to be changed?

 

I appreciate any input!

[Twinmom]

Honestly, insurance coverage for treatment is my biggest issue. I have been able to find all the treatment that I needed privately (ie., not through the public schools, since I homeschool) but we are going broke and not saving for retirement as a result of the bills. We have four kids with special needs and literally none of them get the coverage they need. One of the kids has a genetic disorder whose treatment has been totally disallowed by insurance...and his bills will run to 100K by the time he is 18.

 

HTH.

[HSmomNY]

1. insurance coverage for treatments - my state has a law that autism treatment is covered and we have 'good' insurance put the ABA treatments have not been covered, neither have the OT treatments and we have had to fight for speech.

2. respite care

[Twinmom]

2. respite care

 

Ah, yes...respite care! Should have mentioned that, too. I would do just about anything for good respite care and a nap at this point!

[Murmer]

Ditto insurance coverage....autism is covered but many others are not but need the same level of care. Ie my 4 yr old with severe ADHD, odd, behavior disorder, semantic pragmatic disorder, and epilepsy does not qualify for behavioral therapies that would help a lot so we are stuck using the school to try help but come kindergarten she either has to attend school or stop receiving services.

[Dobela]

Insurance coverage

Respite care

depending on the child - social networking.

[prairiewindmomma]

Insurance coverage---we have a decent plan compared to most but we still have no audiology coverage, no speech therapy coverage, very little OT or PT coverage, no vision therapy coverage, and really bizarre limitations in other areas.

 

Respite care isn't an issue in our area, but getting in to see good pediatric specialists is a nightmare. Our local children's hospital has up to a year's waitlist to see a physiatrist. We could only get our daughter seen by ped neurology and ped GI doctors when she was in hospital....the wait list for in office visits was too long, even for really urgent issues. No ped hematology/oncology patients were turned away, but we often had folding chairs set up in the infusion room---imagine 40 kids with nausea and diarrhea sharing ONE bathroom with ONE door and ONE toilet.

[Heathermomster]

I'd like to see a tax break for all the out of pocket expenses like tutoring and testing, due to ps system's inability to meet the needs of the students.

[dtsmamtj]

I'd like to see a tax break for all the out of pocket expenses like tutoring and testing, due to ps system's inability to meet the needs of the students.

:iagree:What about a sliding scale for those things that our insurance won't cover? Our daughter has DS and unless it is medical - forget it!! Granted it has made me do things I never thought I was able to do in order to help her, but there are times when I feel like I have hit a brick wall and could use some help especially in speech therapy. My son's CAPD was covered somewhat and the speech therapy place worked with us based on how many visits we were allowed, etc. They had me doing more with him at home which was a good thing as well.

[AmyinMD]

Federal mandate for insurance coverage. My son has Autism and almost nothing is covered. State mandates do no good because ERISA plans are exempt from them and so many companies are going to them to get around the state mandates.

 

Expand services that are available because there are huge wait lists for many programs. The Autism program in my state has an 8 year wait list.

[myboyluvsdinos]

I'd like to see a tax break for all the out of pocket expenses like tutoring and testing, due to ps system's inability to meet the needs of the students.

 

I think this is the biggest problem -- our public school system is incredibly flawed. So many children do not qualify for special ed services and fall between the cracks. Then there are those that do, and most SE departments are woefully unable to meet their needs -- both in terms of staffing and also being educated properly (teachers don't learn about dyslexia in college -- which is insane!).

 

If our public school system could properly meet the educational needs of kids (we are such a VERY LONG ways from this) and help all the children who need it, children would be much more successful, and families wouldn't have to spend nearly the amount they do seeking private therapies/tutoring.

 

As it is now, children are so much better off if their families can afford to take matters into their own hands pay for outside testing/therapy/services, but many families cannot. And so these children continue on struggling. It's really a travesty to our children and our society as a whole.

[Riverland]

nm

[heart'sjoy]

-open courseware for a lot of the therapies that can be done at home.

-Online crash courses for parent training to use the therapy at home.

-1-800 hotline numbers for databases of resources, like the breast cancer one.