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.

[LIZARD]

Drew would probably still be unmanagable witouth Home-Based Therapy Services. We have had HBTS for 9 1/2 years (10 years this April), and I have seen him transform unbelievably! The one thing that's still a prominent issue is his expressive language, which is slowly getting there. He is 13, and it's at about 5-6 yo. His behavior has changed completely--no more major meltdowns (although very occasional short tantrums involving yelling echolalia and rare striking his arm with his fist). He has manners, concern for others, can wait short periods of time, and is learning that when Mom cries, it isn't always because of something he did. :) (Some of you know I recently lost a close friend, and it's allowed us to talk about death and grief with him in a way I think he's starting to understand.) He also isn't as rigid about schedules and can actually use a verbal checklist. :)

LIZARD :)

[FabTXMomma]

Thank you for your reply.

Would you mind describing in more detail how the HBTS program works in your case and how you got started? It sounds great.

[LIZARD]

Hey, Carolyn. :)

I was googling, trying to find the info you need locally, but I'm not sure if it's what you need. HBTS in RI is a state-run program, paid for by state taxes and MedicAid, that involves a personalized program designed to target the individual child's needs. Our initial intake took about an hour, and the program focused on goals to be reached within 3 years. Staff are hired by state-run agencies and trained to work with the kids. It may start out similar to ABA for young or low-functioning kids and work up gradually into more complex tasks and life skills. If this is something that interests you, call your local Dept of Human/Family Services and ask if it's available.

Good luck...

LIZARD :)

[FabTXMomma]

Oh, I'm pretty sure it's not. Or if it is, it's one of the 10 year waiting lists I'm already on.

What I'm hoping I can do is get more information about what other ppl in other states are getting and then cobble something similar together from the information I get to present to MHMR (Mental Health/Mental Retardation) agency. In Texas, autism is still considered a co-occuring condition with MR so they are the agency that usually provides services to ppl with autism.

I've been through an intake and am still waiting to hear from them. I know we'll be getting a caseworker. They keep asking me what I want, and I'm not sure what to say. I keep asking what they do for other families, and I don't get a straight answer. Just descriptions of services that were written by a bureaucrat somewhere, and I can't understand what it would actually look like, kwim? So I thought I could get some ideas in plain, everyday language from other parents, and that might help me understand what to ask for.

Also, I get the feeling that unless we get into one of these Medicaid waiver programs (the ones with the LOOOOOONG waiting lists), there probably isn't enough funding for what we actually need....I know the services I'm going through the intake for are NOT funded through Medicaid; it's money the state gives directly to MHMR and there's not a lot of it. And for some things, like respite for example, we'd be expected to find our own workers. Fun.

I know I don't have it as bad as others though. I know a mom in Austin who has a child in a wheelchair. He's getting too heavy for her to lift and do transfers, but she can't afford to pay someone to come in and help. And the only programs that will help pay for that are the Medicaid waiver programs that have such long waiting lists. So in the meantime, she's probably going to hurt her back very severely, b/c she has no other choice. And she's a very informed advocate and has done some serious research trying to find a solution to this. So frustrating.

Thank you again for talking with me. It's helping give me a clearer idea of what to aim for.