You are here

Disabled, but not enough

justmakingthebest's picture

The last couple of days have been pretty frustrating. I have made calls to SSstb21's therapist and DARS counselor. Both of them say that we are in the land of no help. While SS is disabled and not able to live on his own (neither think that he is even close to being ready to live on his own with a roommate), he isn't disabled enough for any services that would help with a group home. 

There is a private group home not terribly far from us but it's close to 6K a month! That is insane. DH and I aren't "hurting" but we don't have money like that!! The DARS counselor said to wait until after his 21st birthday and apply for SSDI again for him. He was declined at 18 and I haven't messed with it since. It takes SOOOO much to deal with it all. We do have him getting ready for tri-care for life, so he will have health insurance but tricare doesn't cover him being residential unless it is medically necessary, which this isn't. 

I was told that it has a lot to do with his age and there it a lot of battling with autistic kids his age and parents. While physically he is a man and he because he is about to be 21 he feels like an equal in our house, that is obviously not the case. His counselor said expect it to get worse before it gets better. 

DH has told him that he has to have his room cleaned to Navy standards by Saturday morning. If it does not pass inspection he gets moved to the guestroom and loses his big room. 

DH has one, very valid, concern. The room over the garage where SS20 is currently has 2 exits that are on the opposite side of the house than the rest of us. His 'wing' is very separate. If we move SS20, it would be into the room that we have SS16 stay in. DH is worried about SS16 sneaking out and feels he can't be trusted if we had to swap the "guest room". Then he said "But who knows if SS16 will ever even be back. We are essentially held hostage by an a$$hole teenager that I can't trust one way or the other". So yeah... held hostage again by SS16. 

 

Comments

Survivingstephell's picture

SS can stay in the guest room, which could be the sofa or an air mattress in the basement.  Point being he shouldn't just get the room because it's empty.  Cross that bridge when you get there.  If he does stay in that room just rig the door with a can of paint.  Just like Home Alone    LOL.  

CastleJJ's picture

Is SS20 eligible for Medicaid since he is an adult and doesn't have an income? If so, he may be eligible for waiver programs to offset group home costs. Otherwise, look at behavioral residential housing. Sometimes, those are more aimed at autism diagnoses because there is no other place for these people to land. I have a lot of experience with this because my SIL is 20 with severe cerebral palsy and my younger brother is 22 with autism. We have been through all the processes, looking for loopholes to get them support. 

My brother is living with my parents and they have the same problem, he feels like an equal and runs the roost no matter what my parents tell him. They are at their wits end. 

justmakingthebest's picture

He might be. He does have military health insurance and is allowed to stay on it forever- even after DH retires. I don't know any of the ins and outs with Medicaid. Can you get it and not be on disability? He does work, but only brings home about $425/month. 

CastleJJ's picture

Yes, Medicaid is income based. Anyone can be on it as long as they are below a certain income threshold. Once he gets SSDI, he might also be eligible for Medicare due to disability. 

halo1998's picture

I feel for yea....its not easy when they "look" like and adult..but so are not an adult.

Just **hugs*** and so much admiration for caring for him.  

ESMOD's picture

You know.. I have an issue with them saying that he is disabled to the point where he doesn't qualify for help.. yet can't live independently.  I mean.. this is an adult we are talking about.. if your DH was not inclined to allow him to live with you.. what would happen?

I would continue to pursue SSDI... many people do not succeed with initial applications.. and there has to be a way to set him up better for a future where you and your DH may not be around to help him manage!

ESMOD's picture

I might not be against doing some broader research to find out if there are any other states that provide better access too.

justmakingthebest's picture

I agree. He would have to rely on family to care for him. He can't do it on his own. Without that, he would probably be homeless. It is a really messed up situation. I think the way things are going to have to go for us is:

1- Tricare for life this month.

2- Medicaid

3-SSI 

Once we we through those we can look at more options with the opened assistance for him. DH's and my only concern for our immediate future was his having health insurance. We really weren't too worried about the rest, we can financially take care of him and we have plans in the event of DH's and my deaths. However, it is looking like we are going to have to heavily rely on assistance to get him further into the real world. 

DHsfamilyfromhell's picture

Someone I know with the exact same problem with their grown up child did a law degree to get around this problem. It may seem a bit extreme but they were older parents who wanted peace of mind of their adult son settled somewhere before they got too old to help him etc. Many obstacles were put in their way. 

I have to ask about 5 different people to get a correct answer regarding things to do with my daughter, people can never be bothered to look up the correct info in the first place. 

Have you considered going to a lawyer that knows this area very well to make sure the information you have is correct and maybe an idea you haven’t thought of?

Wicked stepmo.'s picture

SSI will always deny the first time. You should find an lawyer who specializes in SSI disability they will take payment out of the settlement. Once approved for SSI he will also get medicaid and food stamps.