Parents of Disabled Children - Coordinating care/benefits/trusts/wills

[welsummerchicks]

This question is for parents of disabled children - adult or minor children -

How do you deal with benefits such as SSI, disability, and future planning?

Who do you go to for help when you have problems with these issues?

Do you have someone coordinating your child's care and future?

How do you handle it?

If you are a grandparent or other relative and have seen these situations close up, please feel free to chime in.

I just went to a meeting discussing Social Security benefits for children, and am intrigued with this entire issue.

I found the regulations and rules and guidelines to be overwhelming and was wondering how in the world people handle these issues.

 

[goldenluver]

I care for my disabled mother, not child.

We have a senior and disabled services social services councelor. She has been a real help, after my moms strok, she was asigned to us from the hospital. She was able to get her qualified for medicade to help her to get a power chair and other equipment she needed.

 

[cheri222]

There is no one to really coordinate this. It took us 2 years to get the in home wrap services. They try to assist, but are really overwhelmed with their case loads. Estate and ssi/future planning we really haven't gotten into as they are 6 and 11. It is sometimes just enough to get through the day. In PA we also have a program called hipp which covers the cost of private ins if the parents are working to pay ins. We qualified for this program for years but no one told us about it. We are talking about 800 a month so it is a big deal. One child will need bone grafts this summer so I am looking for a way to fund my time off with him. I am the primary income and also deal better with the children's issues, so this will be a challenge. I know I can take the 90days if necessary as an fmla but how to pay the bills? I also want to enroll the kids in therapy riding. We are lucky to have a center for this about 10 miles from our home. Most everything we find out about is through word of mouth.

 

[welsummerchicks]

goldenluvr: you say, 'she was assigned to us from the hospital'

Does this person work for the hospital, or a government agency?

 

[baltimoreharps]

As a mom who is going through this right now, it's pretty much a do it yourself thing here. We do have a caseworker through SSI who has been a tremendous help and advocate for us because it is tremendously confusing process. DS is 19 so it's a brand new world trying to get him placed into an assisted living facility with his autism.
So far, it's been a very fast process, much faster than I expected it would be.
Our local SSI office has been very helpful about answering questions about what to do, separate accounts, etc that need to be set up now that he is receiving benefits and generally making sure that he is getting the assistance that he needs so desperately right now. (He is also a type one diabetic, the 2 dx;s are horribly bad to manage.)

 

[goldenluver]

Quote:
she works for the Department of Human Services, for seniors and disabled citizens. the hospital social worker gets a hold of the for you when they fill you should have their assistance.

once we had this helpwe got the medicade insurance, which is the OMAP (Oregon Medical Program) Medicade would be the State medical insurance.

she was evaluated and they decided that she needed 24/7 care, which I do, they don't pay much, after all my mom is supposed to pay my wages then the State pay the rest.

she was given a power chair.

now she has been having kidney failure and is now doing dialysis 3 times a week. we deal with wound care and adema issues in her legs.
because she has had such wound problems and getting week from kidney failure she has recently been issued a bariatric bed and bedside camode for someone of a larger size, even gotten a hoyer lift and sling as well as a trapeze for her bed.


I will say if it weren't for the wound care nurse we go to see regularly we would not have gotten those most recent things at all because insurance usually don't pay for them. she just has extreme wound care ( receive about 12 boxes of supplies a month shipped to us that we do not have to pay for) that she is considered a high risk for more pressure sores.

 

[welsummerchicks]

Every one of these responses has really helped me get a better idea. I hope more people chime in too.

I'm thinking about a degree in law and medicine, just trying to understand first, what are the needs there - how do people get help and where are the gaps.

 

[goldenluver]

something to remember...

they never volunteer any extra information,


such as

I recently talked to her about the change in the way they make my payment to me, and I mentioned all the out of pocket things that I purchase for my mom that insurance doesn't pay for and she told me all I needed to do was give her the receipts and she could arrange for them to reimburse me.

she is still working on that even if it is now going on 3 monsths since I sent her a pile of reipts.

 

[baltimoreharps]

Quote:
Oh there are a LOT of gaps in the system. If I didn't have as much experience dealing with it here in NC I would be completely lost. As it is, it is going to be extremely difficult to place the oldest because most group and independant living facilities are for more typically autistic people. My son is highly intelligent, he just does not take care of himself between the two dx's and he cannot function as a normal adult even as intelligent as he is.

The mental health system here has no idea of where to place him even though he's been in thier system for years so we're working as hard as we can so that he can be safe and we can be safe and so he can be as healthy as possible.
One thing that helps in over age children is to get legal custody asap after the child is of legal age. My husband and I started that process well before he turned 19 and were awarded custody about 2 months before he aged out of his insurance. Thank the Lord we started as early as we did, we had NO idea that the 19th birthday was the age out date here since he has to go to a pediatric endocrinologist until he's 21 unless married, ironic huh?

So while he is going to be taken care of, we still have no idea of where he will be placed and can start learning life skills that he is very restistant to learning from us as his parents because we "know absolutely nothing" lol.

Gotta love Aspie kids. He is 19 in age, but about 11 emotionally and in social skills and that is with a fantastic therapist who has worked with all of us since he was 10.

 

[welsummerchicks]

There are some very difficult things about coping with a kid who is that intelligent yet still so disabled and needs help with self care etc.

I think it's very, very difficult for relatives and friends to understand that dilemma for one thing.

I'm trying to understand the different issues that parents (and carers of parents) get faced with at different stages, so just keep the information coming! I really appreciate it!