San Mateo County is wealthy, beautiful, and filled with opportunities. I believed that bringing Rhia to this prosperous city close to Stanford Medical Center (where she gets her medical care) would be wonderful. Rhia agreed. No more three-hour drives. No more being bored in a tiny town. No more hot summers. We packed our stuff and moved to a new home, filled with hope and excitement.
That was four months ago. We’re still waiting for the opportunities.
The first barrier to greater opportunity for Rhia came from Social Security. Despite the fact we pay three times the rent we did in Ukiah, Rhia’s disability check was reduced by $200.00. Why? Because the Federal Government counts any rent below market rate as income. Therefore, Rhia is getting support in the amount of $300.00. Never mind the fact that the market rate is over $1000 for a bedroom and Rhia only receives $900 to live on. It doesn’t matter that what she receives doesn’t come close to what she needs to survive. The Feds wouldn’t count reduced rent against her if she lived in subsidized housing. Oh, there’s a 5-year waiting list for subsidized housing? Well, it’s a good thing Rhia has somewhere to live! She could always be homeless and get the full amount needed to survive. It’s up to her.
Thanks a lot Feds. (insert middle finger here).
And then the Federal Government screwed Rhia again; there was a paperwork problem transferring her MediCare from one county to the new county. The process was already slowed down due to the holidays, and then to make it more fun the so-called President shut the government down. There is no one to answer the phone or anyone to figure out which black hole Rhia’s paperwork is trapped in. So we wait. She needs MediCare coverage to go to the doctor and she has to go to the doctor for a physical exam before she can start a day-program. But who cares? The President and Congress are bickering over a stupid wall! Too bad Rhia, you get to wait.
Day programs… there are some incredible programs for people with developmental disabilities. But getting into a day program isn’t easy. Waiting lists are months, even years long. I found a great program that is the perfect balance of center-based and employment. They provide art and vocational support and there are two other deaf people in the program. The director I spoke to thought maybe February, but now it looks like they won’t have an opening until Summer. Then a newer program opened and they’re happy to hold a spot for Rhia. Unfortunately, they are completely community-based, meaning there isn’t a center where Rhia can rest when she needs to. Plus, no one knows Sign Language. But the people are kind and Rhia is so bored and lonely we’re willing to give it a try.
Oh, wait, Rhia’s MediCare hasn’t transferred yet. Sorry kid, you have to wait until the Feds get their act together and reopen the government. Hope you like sitting around the house coloring all day. And it’s a good thing your mom is in Grad School so she can get a student loan to pay for childcare out of pocket.
I am broke, Rhia is lonely, and the government shutdown drags on. I’ve done everything I can, called every number, talked to every human I could reach, and have hit a massive bureaucratic brick wall.
A wall has been built, just not the one Trump wanted.
This is why people with disabilities tend to stay where they are, regardless of whether or not the services in their area are decent, or even accessible. This is why there are so many disabled people living on the street, or in sub-standard housing. Rhia has me to fight for her, but how many people have you seen who don’t have anyone? How many times can you be defeated before you just give up?
I will never give up on my daughter, but we sure could use a break.