The Disability Shuffle: Two steps forward, one step back. OR, One step forward, two steps back…. The frantic drumming of time passing pounds in your ears as you shuffle and twist and beg others to listen and join in your dance of survival. “Can I keep up or will I fall and break my neck?”
As you straddle the wall between Normal and Disability Worlds, you wonder, “I’m dancing as fast as I can, but is it to my own song, or am I merely a puppet dancing on the professional’s strings?”
This is the 10th post about our attempt to bring our son with the label of autism home to the county where we live. Over the course of a year, this is about the 500th action step we have taken to try and make this happen.
Today I have good news and bad news.
GOOD NEWS
One of the local non-profits is willing to purchase a house in the city where we live.
According to the policies of HUD, parents and family members are forbidden to own the houses.
This non-profit has been around for a long time and will likely be solvent. Aaron has lived and rented one of their houses in B County for the last 13 years. They do a good job.
They are willing to get the house HUD approved and Aaron would be able to use his “housing choice voucher” to become the head of household and rent from them. This voucher is also good for any roommate Aaron would pick.
Aaron could live in this house for the rest of his life. The non-profit said they would let us be involved in the process of finding a home. It could be close to where we live, so we could stay active in Aaron’s life and watch over his care and the unpredictable staff. Since we would treat this home like our own, we pledge we would be good stewards.
Finding, Purchasing, Renovating, Furnishing and moving in will take time. And we are already on our second 30 day extension in the HUD timeline. Ouch, only 60 more days.
Since Aaron would use his HUD voucher for himself and another person, this would be a long-term solution which would help costs in the new county.
HUD HOUSING PROBLEM SOLVED. Right?
With creative problem solving and resources in Disability World, we could meet the criteria set up in HUD Regular World. (Another time we can talk about how HUD Regular world, might be another parallel universe from Normal World.)
EXCEPT
The County Board of DD must give their permission for the non-profit to come into the county and be willing to work with them. I don’t think this is any law, just good business practice.
BAD NEWS
Each county sets up their own non-profit to rent the houses to people with disabilities.
Some of these use HUD Section 8 rent vouchers,
Others just have the people pay the full rent, and
Some have their rent subsidized local county funds.
Each County is Different.
The non-profit housing agency in B County is pretty independent of the board.
The non-profit in W County is run from inside the county offices.
Same mission–to provide affordable accessible housing–totally different structures.
B County uses many HUD vouchers; W County uses rent subsidies from local funds.
Aaron and the people with disabilities I am talking about are among the poorest and most vulnerable of Americans. They have labels of physical and intellectual disabilities, autism, developmental disabilities that started before age 22. Many have no family or others to help them at all. Each county tries to keep the rent at 1/3 of the person’s income or social security check–which is around $120.
Everyone knows there aren’t many places to rent for $120. Even with a second roommate that is only $240. If you add the special accessibility needs—well, you get the idea. People with disabilities are going to need some sort of rent subsidy to live in any decent house or apartment.
Our new county’s housing non-profit does not have the funds to buy any property in our city (the largest one in the county). They have most of their property in the county seat, which is centrally located to the county, but not to the population. I wrote about the one property they do have in our city in Part 8| Roommate hunt continues Medicaid Waiver Style
and Part 9| Should I rent a billboard? So, bottom line.
Our new county is “thinking” about accepting the offer but it has to go up the food chain. It is a bureaucracy and even if it is a good bureaucracy, there are staff who go on vacation, go to conferences, have babies, use personal days, and have full agenda’s that don’t include Aaron Ulrich, someone who currently isn’t even in their county. YET?
So we wait. And wait. And pray that we will be able to meet the timeline. We keep dancing on the wall.
And maybe they are hoping if they keep us dancing long enough, we will wear out, and exhausted we will give up and stay where we are. Not bother them in this new county.
But Tom and I live in W County. Have for 12 years and plan on being here for the rest of our lives.
Meanwhile…
HOUSE OF CARDS
Friday we got a notice that the Director of Aaron’s Day program resigned suddenly. We LOVED this director. She put her heart and soul into developing this new day program in our new county.
So, Aaron loses his good friend and a competent professional who loved him.
As it looks like we might be solving one problem and be able to add one card to the residential domain of Aaron’s life (God willing and the creek don’t rise) another card in the vocational domain collapses.
So be it in the life of a family of people with disabilities. And when this HUD Housing Card is in place, then we get to continue the search for a roommate who has a Medicaid Waiver and who would want to live with Aaron.
Hey, wonder when families will get a break and be able to go on vacations, take personal days….?
One step forward, two steps back… The Disability Shuffle continues.
Comments:
Does this make sense? Does your county have a non-profit board for housing? Does your family member have a HUD or other rent subsidy? If so, who owns the house? Today I’m going to concentrate on the hopeful promise of the non-profit and pray it works. What hopeful promise are you praying for?
Keep Climbing: Onward and Upward.
All my best,
Mary