State services/community supports?

[FabTXMomma]

Other than ECI and school services, is your child receiving any other services/supports/therapies through your state or community?

Texas has to be the worst state for this. 10 year long waiting lists and a bureaucratic maze that requires you to know what to ask for make it almost impossible to figure out what kind of supports and services my son might be able to get that would help him.

I'm burnt out from having to do constant supervision when he's out of school. My dh and I have to tag-team constantly which is causing issues in our marriage b/c we can't make it our primary focus. Other than school services, ds is not getting much in the way of therapy, and this is not going to put us on the road for him to live independently.

So this may be a long shot, but I'd like to hear from parents who have all different ages of children! What are you getting that's helping? Is there anything you found out about too late or that has since been created that would have helped you when your child was younger?

Perhaps in the answers, I'll find the questions I need to be asking.

[DevNAbbyMom]

We stopped receiving any state services when DS turned 3. There aren't any that I know of here that helps with therapies and such b/c they just assume you get them through the school system.

[4littlelambs]

I'm not receiving any currently but I know they are out there and we have been approved... it's just me getting my act together and making some phone calls!

Many families that I know are using something called "in home support" and others are using "respite"... both sound wonderful to me... how 'bout you?

In home support... I think... is where someone comes into the home and spends time with the family (and the child of course) working on life skills, playing a game, homework help, e.t.c.! Many families use this daily... or several times a week with school age children (for homework help mostly)! I think the in home support person can also take them into the community to work on life skills, e.t.c. (out to eat, playground, ballgame, e.t.c.)!

Respite is just that... a babysitter!

We have qualified for both; however, there is a minimal fee for the respite and I do have to find my own 'worker'?!

There is also hippo therapy available to us (also qualified for but I'll wait til spring I think)!

Maine has been wonderful... I have had MORE than my share of therapies since the very beginning! So much so that I have complained that I'm overwhelmed with so many people being involved... but I have learned to appreciate what we have because so many other states struggle to get ANYTHING!!

[Hadley]

I don't have a special needs child, but I volunteer for this agency (or whatever you would call it :)). www.nbeginnings.org Our director has a great love for special needs children and her passion is autism. We are sending a family (and our director and one staff member) to the Carbone clinic in New York in June for training. We are hoping to begin being able to do some respite services soon.

[lumom]

in michigan there are funds available to for help outside of school. our boys are very high functioning so we don't utilize much of it but some of my friends do. we get something called the family support subsidy every month. it is money to help us meet the special needs of our child/ren. to qualify your child has to have a severe cognitive/physical impairment or autism spectrum disorder diagnosis from the schools. i think families also have to make under $60K/year (not sure if that amount is correct?). they ask that it be used toward whatever you would need because your child has special needs. for instance ours helps to pay our grocery bill since we follow a special diet and pays for horseback riding/therapy that our boys participate in.

some of my friends have respite care help - either in the form of having them stay at a respite home for an overnight or evening once/twice a month or the state paying partial or all of your childcare costs. some get funds thru medi-care/caid and social security as well i think. since i don't utilize these i can't really tell you how to pursue such things. i do know that we have a county department called "community mental health" and that is where all of these things are processed. do you have some kind of mental health department in your county or state that you could contact to ask about such funds or services?

also you may want to look into the autism society of texas and other autism organizations/foundations. they often offer programs, grants and/or funds to families with children affected by autism.

hth it can be exhausting to always have to be "on" with your child. i hope you can find some help soon for both him and you.

lu

[thebeckery]

Other than ECI and school services, is your child receiving any other services/supports/therapies through your state or community?

Texas has to be the worst state for this. 10 year long waiting lists and a bureaucratic maze that requires you to know what to ask for make it almost impossible to figure out what kind of supports and services my son might be able to get that would help him.

I'm burnt out from having to do constant supervision when he's out of school. My dh and I have to tag-team constantly which is causing issues in our marriage b/c we can't make it our primary focus. Other than school services, ds is not getting much in the way of therapy, and this is not going to put us on the road for him to live independently.

So this may be a long shot, but I'd like to hear from parents who have all different ages of children! What are you getting that's helping? Is there anything you found out about too late or that has since been created that would have helped you when your child was younger?

Perhaps in the answers, I'll find the questions I need to be asking.

Carolyn,

I am the first to admit that I know nothing about this, but I wonder if you and your dh would be willing to relocate if it meant that you would have help.

Do you live near family now that can give you any time away?

I'm sorry that you guys are hurting in this area, and I pray that God will provide a way for you to have time to focus on your marriage.

:bighug: