Our House of Cards| Disability Style (Part 3)
Originally published in 2011
Hey, Researchers…
In April, when my son Aaron celebrated his 13th year of living away from home. He was 36 years old so that would be “normal,” except that Aaron has the labels of autism and developmental disabilities.
Each day in those thirteen years, my husband and I have spent our lives taking Aaron to the Doctor or other meetings, trying to make things run smoother, making the house safer and a nice place to live, keeping the staff from burning out, getting to know the neighbors, keeping the funding and agencies communicating and generally holding this house of cards together.
I am not saying this for a pat on the back. I am writing this because there are many parents and professionals who think once you have your child in a residential setting and win the Medicaid Waiver lottery you are home free–your troubles are over–you are finally able to take a breath and have some semblance of a normal family life.
I am also documenting this because I do not know of any research being done on residential and adult issues. And I know the pitfalls of the research by “professional” researchers on parents and families of school-age children.
Obviously, this is our family’s story. Obviously, we are not objective. Obviously, you will not be able to find a big enough sample of people just like our family–to disprove the null hypothesis and statistically state “the truth.” But I’m going to state my “truth” for the record.
MY TRUTH
Like all parents we are fighting the clock; each day we are getting older. We are getting more tired and frustrated. We are losing the battle to get a system in place–so after we die–our children will have at least a small quality of life.
This is the continuing story of Our House of Cards:
In Our House of Cards: Part One, I outlined some of the agencies and companies in our house of cards. Each card is part of a complex system that is interrelated, when one card falls–they all fall.
In Our House of Cards Part Two, I showed the difference between the “normal” person who rents a house, and when “Aaron,” a person with a significant disability, rents a house.
Update: March, 2011
In the last month, our House of Cards is still tottering–but hasn’t completely fallen.
Facts:
Residential Company goes Bankrupt.
March 13, 2011 the residential company that provides the 24/7 staff for Aaron filed for Chapter 11 and Bankruptcy.
Apparently this company held open meetings for parents and guardians, Tom and I weren’t invited.
The residential company is looking for a buyer.
There are a couple dozen people with disabilities who use this bankrupt provider in our county. Many more in other counties all over the state.
No one knows much.
Meetings:
Butler County Board of Developmental Disabilities
Tom, Tommy and I (Aaron’s family) met with several staff people at the County Board and they agreed to temporarily NOT place any more people with the bankrupt company. This would seem obvious in a business, but when there are so few options, the Board often has to do whatever it can to solve emergency housing issues.
That is GREAT news. And buys us time to try and figure out this whole mess without having the threat of a third roommate hovering with his suitcase at the door.
Moving on
After living in Butler County for over 25 years, and serving on the County Board as well as investing hours and hours of volunteer time in Butler County–Tom and I are about ready to throw in the towel with Butler County. I cannot begin to tell you how difficult it is to say the years of volunteer work were for nothing. I am often accused of banging my head against brick walls, working for change instead of quitting. But sometimes you just need to quit. I think this might be one of them.
We are thinking of moving him to another county, we can’t risk Aaron’s safety in a house with a third housemate.
Quality by Zip Codes:
When I was advocating for parents of school-age kids, we often joked that parents should invest in a mobile home that could be moved from school district to school district because the type and quality of services depended on “zip code.”
Warren County Board of Developmental Disabilities
We talked on the phone with a staff person from the Warren County Board and then in person last Friday. The Warren County staff person was knowledgeable, took Aaron’s paperwork and answered a gazillion questions. We learned Warren County passed their levy and the long-term funding is okay for now, though the budget cuts loom everywhere.
He explained they have a Housing Non-Profit Organization (like Partnerships in Housing). We did drive-bys of two of their houses.
Adult Day Program
Since the adult day program was behind his office, we saw some of the people playing basketball (it was a beautiful day–this was age-appropriate). The program was large and for people who “didn’t want to work.” I’m guessing this is a segregated adult day care program. It would be our last resort.
Phone Calls:
Everyone we talk to gives us the phone numbers of 2-3 more people to call. No one says, “let me track down this information,” or, “we need to know the answer to this question so I’ll call and get back to you.”
Professionals should be the people seeing the Big Picture and providing the leadership for change.
LADD–talked to a person about their home ownership program, a couple families who bought a house collaboratively, a grant to help individuals with the down payments, Section 8 HUD vouchers, the Butler County Housing Authority, Trusts and Foundations…. This person was very nice–but again, no one is gathering the information for the Big Picture.
RHC–(used to be Resident Home for the Mentally Retarded–started by parents) they know some things about HUD, have multiple contracts to be the landlord for homes (they currently are in charge of Aaron’s house and do a great job)… This person is out on sick leave, but another person will be taking her calls and will get back to me.
HUD–Everyone recommends HUD.gov–but all add they can never find anything on the website–but give it a try.
One of the national advocacy experts on HUD, answered my phone call with, “And why should I talk with you?” (I was going to say something smart aleck about this, but…guess my thoughts.)
Apparently there is a “portable voucher” in HUD, if that is what Aaron has, he could take it to another county. There is some concern that parents can’t own the house their child lives in, need a HUD attorney to check on this.
The HUD rent subsidy is in Aaron’s name. So, the word I am getting is that: 1). it will not transfer out of the county. 2). Aaron could take it to another house in Butler County.
I’m still trying to track down that information. Does anyone know anything about that?
According to the County employee apparently Warren County hasn’t given any new HUD rent subsidies in a long time. So, it looks doubtful Aaron would be able to get one in Warren County.
There is no way our family can afford two houses and subsidize Aaron and his housemate’s rent.
I’m not sure where that will leave Aaron’s current housemate if Aaron takes the subsidy with him. If I was the evil person they say I am–this wouldn’t be a concern, but we care about Jack.
Ohio State Dept:
There are Residential Provider Companies: for profit, non profit, small, large….
Our family can become a provider, there are independent providers we could manage, and there are just independent providers.
All of this will take about a year and involves lots of paperwork and research. It would also be jumping in the fire–involve taking on a new career and ongoing work–certainly not a respite for elderly parents.
There is one person in Butler County who has a foster family–a family friend. We do not know any family friends or relatives who would want Aaron as a foster person. The county doesn’t know anyone either.
No one can really tell us much because the Governor is changing the rules and cutting most of the state office staff.
Butler County Case Coordinator:
Have a phone call in and sent her a 20 point email. We love our case coordinator who has been with us for over 20 years. If we move to a new county we would lose someone who knows and cares about Aaron–as well as a friend.
Personal Financial Issues:
Family Financial Planner–we need to check with our own tax and financial planners about how much we can contribute to buying Aaron a house.
Realtor: We met with a realtor and he visited the house Aaron is currently renting as well as showed us 8 houses in his neighborhood. None of the houses were going to work–too expensive or just shit.
With all the ups and downs in Aaron’s life, we aren’t even sure if we want to look at houses in Butler or Warren county. We are asking the realtor to forgive us for changing our minds.
He did meet Aaron and helped him understand our complex issues. He was very kind to Aaron… and us.
Friends, other parents of kids with disabilities:
One friend just says she is keeping her son at home–it’s not worth the aggravation to try and figure out the system.
Everyone is appalled the county is forcing another roommate when the residential situation has been so awful for so many years.
I’ve been talking on the phone and am going through the house she and her husband bought for her son.
Last phone call:
IRONY: WE parents are the support system for the professionals.
The supervisor of the residential company just called. He said the substitute staff person, Aaron and Jack were sitting in the driveway of their house. He asked if I could bring a key and let them in the house. NO ONE HAD A FRIGGIN’ KEY.
Of course I met them. But as I drove the 15 miles, I kept thinking these same people had fits when I insisted I wanted a house key (that was one of the reasons I had to become Aaron’s “guardian”).
PS. There were no spoons in the silverware drawer, again.
My Personal Thoughts:
1. There are many parents who just give up and keep their child at home until they die. (I don’t wonder why?)
2. None of the professionals know how the system works. They only know their little piece. NO ONE SEES THE BIG PICTURE and no one seems to care to know the big picture.
3. Even though we have had “experts” from Canada and the US present workshops in our county, there is no one looking at creative options with parent involvement…
4. Parents are always the only ones who are looking at things from their child’s POV.
5. Parents are the only ones who take the life-time look. (Professionals often tell you they only have two more years to retirement…)
6. There are many wonderful professionals who want to help. They just are stuck in the status quo. They are not usually the Linchpins that Seth Godin speaks about. They don’t “poke the box.”
7. Everyone focuses on school and young people under the age of 22. There are no laws or mandates for adults. So, there is no one who focuses on adults who live 40, 50, 60 years AFTER leaving schools.
8. Residential Companies seem hopeless, money hungry and bureaucratic.
9. There doesn’t seem to be any agency, government dept. or parent group that is even trying to figure this out. So individual parents are on their own.
10. Everyone just wishes the problem would go away.
Your Turn:
Any words of wisdom? Any suggestions? Any grants or research projects that could help? Any great programs to suggest? Any????
Keep Climbing: Onward and Upward
All my best,
Mary