The US Department of Justice came to a settlement with Virginia on its care of the developmentally disabled. I watched this issue closely as I had some limited involvement with the investigation on the waiver waitlists - it took me two years to get on the IFDDS waiver waitlist and I had to drive more than an hour away to do it. Turns out that I got some misinformation, but this is a process that was fraught with it in a system that is woefully inefficient. I don't know how long it will be before we get help - they are making 450 slots (the minimum amount) over the next ten years and we sit about 200 slots after that until his number is up. But it was nice to be in a room in Richmond with so many advocates and families elated for the change. I want to keep Jimmy near me, even as I grow older. I don't want to see him in an institution. His future is still hazy to me - I don't know what it will look like, but to not see an institution as the most likely option is somewhat of a relief.
I think this weekend is defined by the probable loss of a friendship of longstanding. I love my friend dearly, but I have been hurt badly. In large part, that is due to how I chose to take the slight. That my sensitivity, my reaction, my issue. But when you look at something and it starts to feel like a pattern... how many times do you live with the sting before it starts to burn? I don't have much of a social life and have many more acquaintances than I do true friends. I do not taking the thought of ending any relationship lightly. I wish I had something more poetic or thoughtful to say, but... this sucks.
1 comment:
The DD waivers have pluses and minuses. We were on the waiting list for 9 years. We were in last’s year’s batch of approved slots.
1) The pay offered to providers is sub-standard for Northern Virginia
2) We found a person to be one provider and pay an additional premium over the state payments.
3) An agency provided another provider who had absolutely no training (was a neighbor of the person in charge of the agency) who does not receive a premium and is sub standard.
4) In order to receive benefits, your child must be on Medicaid, which means he can never have more than $3K in cash available to him, which makes having the child a beneficiary of a will a real problem.
5) Medicaid has a program if you supply medical insurance to the child, they will reimburse the copayments you make to an employer for medical insurance so you don’t use Medicaid services (received our first one this month, so our insurance cost our family nothing).
6) Our daughter is an additional provider (and the best of our three providers), so she has a guaranteed job when she comes home for college and the funding helps pay for her expenses.
7) Between HIPP for Kids and daughter’s pay we get about $8,000 a year and 30 hours a week, some of which we have to supplement.
8) When the new waiver slots open up, there will not be enough providers and the providers available won’t be worth their weight in mud.
9) Did I mention we waited nine years for this?
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