Parents of disabled kids thread...

Really interesting article that made me think of MLH’s son’s furniture plant tour.

The town that gave the world Spam is proud to be ‘autism-friendly’
In Austin, Minn., businesses are trained to support people with autism.
https://www.washingtonpost.com/national/health-science/the-town-that-gave-the-world-spam-is-proud-to-be-autism-friendly/2018/09/21/843218c0-95aa-11e8-80e1-00e80e1fdf43_story.html

@momsquad, thanks. We had a wonderful weekend with our son. He and DH reflagged some of the property line - they tromped through the woods with our two dogs and had a great time. He wants to go back up with us next weekend! The colors should be peak then. :slight_smile:

@oldmom4896 thanks for posting the article. What a cool town! In southern Maine, there’s an organization that specializes in placing disabled people in jobs. I think I will see if I can volunteer for them in some way. :slight_smile:

So glad you had a good weekend with your son MLH and hope the job works out!

Ooohhhh, maybe we will make a trip to see fall leaves—thanks for awesome suggestion!

DS had job training at the beginning of the week and his first day of work yesterday! He will work two hours on Mondays and two hours on Fridays. So far, so good! And the staff at his house can give him rides to work so I won’t have to pay for Uber. Cautiously optimistic!

DS was in the hospital for ten weeks, starting on December 7. He’s back in his apartment now and seems good. He’s reading again, a huge step for him. He also starts work again on Monday. He’s such a great guy - I hope he’ll be stable for awhile.

YAYAYAYAYAY! One for the good guys!! https://globenewswire.com/news-release/2019/03/05/1748331/0/en/U-S-Federal-Court-Finds-UnitedHealthcare-Affiliate-Illegally-Denied-Mental-Health-and-Substance-Use-Coverage-in-Nationwide-Class-Action.html

Good start. Sadly, it ain’t over until the nine person choir sings…

Well, our insurance solved the coverage problem by making physical coverage as crappy as mental health! I guess they showed us! Equally horrible. :frowning:

I don’t remember which insurance company (I don’t believe it was United Healthcare) whose Medical Director admitted under oath that he/she didn’t review any medical claims requested for review after initial rejection.

^ It was Aetna, @SOSConcern

You think its going to the Supreme Court, @BunsenBurner?

I am not a litigation expert, not even a dummy, lol, but generally when there is a lot of $$ at stake, appeals will follow. How successful they are - depends, but the SCOTUS is the final frontier. Hope this court’s decision will be the end of it. It is time to treat the brain just like any other organ.

I do volunteer work at a housing unit that has a lot of intellectually disabled adults. Most of them do not have anyone to oversee their care other than the paid staff and volunteers. Those whose parents have died do not have other family members active in their lives. The incidences of misfortunes and troubles that happen to these individuals is very high. The turnover is high with many getting moved to nursing homes and jails. That was always my fear about having a disabled adult child which is why I spend some of my time there. It’s as I expected and feared. When the parents are gone, life takes a sad trajectory downward for those who cannot live independently.

The model here can work with just a bit more commitment in staffing and more involved family members. More money and more supervised job opportunities would make a big difference too. The shortfall isn’t hopelessly far fetched. But for now, it isn’t working all that well.

@cptofthehouse I have a friend whose SIL was disabled - the parents didn’t involve the siblings enough, and didn’t have a real plan for when they passed. I know nurses that work at some of these local community homes, and this gal did go to one of these homes - brother and SIL/other family keep close ties.

It just depends - as will all facilities and experiences there is a range of care and caring people.

I’m trying to keep my son’s siblings well-informed about their brother. My middle child has told me he will do whatever he needs to in order to care for his big brother one of these days. I’m glad we’ve got the 529 ABLE account started - there is already $7,500 in it after just a couple of years. I think he will have a good amount of money before his dad and I pass.

We know we are fortunate that he lives in such a good facility. They give him rides to and from work (two days a week). They administer meds and check in on him often. I know it helps that his dad and I stay so involved, though. For example, it took a LOT of “encouragement” on my part to get his case manager to find affordable dental care for him. I don’t think that would have happened if I hadn’t insisted on it. :frowning:

You are a wonder!

S2 has autism, middle of the spectrum. He lives with us and has no desire to live in a group home or other facility. We are extremely fortunate that both S1 and D1 have said he will live with one of them when we die. He has a special needs trust that will be funded by life insurance (on me) and an ABLE account that will be fully funded in a few years.

Our kids have been very close growing up and they have always looked out for their brother.

Yes. I knew I wasnt imagining just how awful Aetna is.
I’ve had nothing but trouble since my employer moved to Aetna jan 1.
Lots of in perfectly processed claims. EOBs that have at least one error, incorrect denials.

@momsquad , how is your D doing?