Living in a House of Cards| Non-Profits, HUD, Medicaid Waivers (Part 1)
My friend Debbie Wetzel always said the human service system was a house of cards.
As parents of people with severe disabilities, we need many agencies, many people working together to get basic services.
The right cards are usually hidden from sight. The agencies hope you don’t need them, won’t use them for a long time, and won’t mind their card tricks.
When your child is in school, the ace up your sleeve is the opportunity to go due process, that brings some accountability. However, there are no mandates for residential or adult day services. There is no due process.
It takes a Herculean effort to hold a house of cards together. One piece falls–the whole house tumbles down.
And yet families need all the different agencies and services to try and create a decent quality of life for their vulnerable children.
Even with great transition and long range planning it is difficult to know what to do. Here is Aaron’s Dream Plan number 4. (click here)
Right now Aaron’s house of cards is falling down. Aaron has autism and other developmental disabilities. He is 36 years old. He has been living in a residence for almost 11 years.
It is complex and has taken a TON of work to make every card fit in place. I thought I would start Part One describing some of the pieces of our house of cards. I’m hoping someone will have ideas on how to solve our crisis.
Aaron and his housemate, Jack, rent the house from Resident Home, a non-profit. They have lived there for over 10 years and I think the Resident Home does a good job of keeping the house in good repair.
The house was acquired with a $10,000 grant from the state (for the down payment). Aaron qualified as the person with a developmental disability that needed a home, so it was because of Aaron that Resident Home got the grant. The house had to be located in the city limits of Hamilton, Ohio and there were other restrictions. But, it was the timing, and Aaron’s eligibility that got the initial money.
Aaron signed the lease in his name.
Aaron also put $1000 of his own money into building a patio in the back yard. Tom and I take great pride in keeping the yard clean of trash, tree limbs (the lawn service won’t pick them up) planting flowers, mulching, trimming shrubs….
The house met the current zoning laws. Because there were only two people and one staff person living as a single family unit, there was no need for public hearings or zoning changes.
HUD Approval and Inspections
Resident Home had to get the house HUD approved and meet inspections a couple times a year.
I liked the idea of inspections for safety and hazards by an independent inspector. Since Aaron can’t talk or tell us what is going on in the house, and the staff might not have the expertise–or the will, this provides another layer of protection to Aaron. Plus, if the resident was abusing the house, it provides a layer of protection to Resident Home.
Since Aaron will probably live in this house for the rest of his life, Resident Home has a steady tenant, almost no turnover, and guaranteed rental payment for their property investment.
When Aaron and Jack moved in, we had a room created by taking the back part of the two car garage (obviously, Aaron was never going to drive). This converted room became the permanent address for Jared, our full time caregiver. He stayed for over two years. When he moved, part-time staff slept and had an office in the room. The room has no closet (so technically isn’t a bedroom according to building code) and because it was an addition, the heating and air conditioning doesn’t work well. It’s hot in the summer, cold in the winter. The little air conditioning unit fills the window that was added. There is no outside exit.
It took me over 3 years to figure out the HUD funding eligibility for Aaron. My brother rents HUD houses, so he helped.
Aaron was the first person with a significant disability in the state of OH. to get the subsidy. It took many meetings, and finding loopholes in the fine print. Up until Aaron got the subsidy, there were issues of two non-related people living in the same home (thanks gay rights advocates) and the fact that there was a caregiver staying in the house (thanks senior and elder care advocates).
We were told parents could own the house because there was such discrimination against people with disabilities and housing shortages. But, we were also warned that this could get tricky. Not sure where it stands in 2011. Also, initially we were told that if there were 2 people with disabilities in the house and a full time caregiver, they could apply for 3 bedrooms. Since I wasn’t able to work for pay most of my life, we were grateful Resident Home was willing to buy the house.
Safety Issues–Staff Room
A bedroom with a door that locks was considered a safety issue since there have been caregivers (mostly women-some quite elderly) who are watching men (some of whom have abuse and labels of mental illness). Imagine, a woman sleeping on the living room couch with no where to go if one of the men got aggressive. Though rare, there have been some instances of abuse.
HUD Rent Formula
According to the HUD funding formula, Aaron and his housemate spend up to 1/3 of their income on rent and according to a formula (which only God could understand) HUD picks up the rest. The formula considers if it is a distressed neighborhood, county (urban, rural) whether there is a washer/dryer, stove… in the house.
The house has to be HUD approved and meet specifications like have a front door that locks and screens on the windows….
Aaron’s portion of the rent comes from his HUD rent subsidy and his SSI.
SSI and SSDI
Social Security Income is a small monthly income given to people with disabilities. It depends on the person’s work history and employment and other factors (known only to God) but I think Aaron’s runs about $450 a month. Now, how anyone can live on $450 a month is also known only to God.
Social Security Disability Income is based on a person’s work history and other requirements. It can also be based on the parent’s eligability for SSI.
Amazingly, Aaron qualified for SSDI on his own. Which was good because as teachers, Tom and I didn’t have social security. (I think teachers now have to pay into social security, but they didn’t in the past.)
Work Study and Vocational Training
While Aaron was in Junior High and High School he participated in Work Study and summer, after-school work programs. He made a small wage plus learned great skills. He loaded pop machines, scraped gum off desks, watered flowers, cleaned windows, moved desks out of the classrooms for floor waxings, he folded towels, did laundry, picked up trash…. (He had a job coach with him.)
Because he had a disability at a young age, the number of quarters for eligibility were reduced. Every month I thank Aaron’s great high school teacher for making these jobs available. Aaron gets an extra hundred dollars (I think) a month for SSDI.
It took me 4 years to figure out how to get Aaron a Medicaid Waiver. Aaron was one of the first people to get one in the state of Ohio and the first in Butler County. Ohio did not have the waiver until many years after other states like Minnesota.
Medicaid was set up for people in nursing homes. The “Waiver” was designed so people like Aaron wouldn’t have to move into a nursing home–the money could follow them into their neighborhoods. At the time, it cost about $75,000 a year to keep Aaron in a nursing home or institution. It cost much less to be in his home community.
The Federal Government made a deal with the state of Ohio that they would pay 60% of the cost and the state would pick up 40%. Since the budget cuts, I think these formulas are changed and now the county board of developmental disabilities has to pick up most of these costs.
There are thousands of persons on the waiting lists for Medicaid Waivers. In my personal opinion, it is the strong nursing home industry lobby that is forcing Ohio to use most of its dollars for nursing homes and institutions, rather than the more economical community waivers.
If you are lucky enough to get a Medicaid waiver, you can transfer the money to another county in Ohio (if they approve it) but you CANNOT move out of state.
When we wanted to move to South Carolina or Tennessee to be closer to Aaron’s brother (his future guardian), we learned we would lose Aaron’s waiver and have to get on that state’s waiting list.
We filled out all the paperwork for Tennessee, met with a young social worker who was just married. Basically we were told the only way we could get a waiver in Tennessee was to drop Aaron off at a street corner and say he was homeless. The interesting part of this story is that we checked back with this social worker two years later to see where Aaron was on the waiting list. She pointed to a pile of papers in her office that went floor to ceiling and said, Aaron’s paperwork was somewhere in the pile. She also told us she was now divorced.
Aaron’s name on the waiting list, lasted longer than the marriage of the social worker. We gave up and sold our property in Tennessee.
Too Complicated? Questions? Ideas? Comments?
If you were a parent or had a family member with a disability where would you go? What would you do? Please share your thoughts.
Keep Climbing: Onward and Upward.
All my best, Mary
Personally I think any time it is possible to guide some-one with a house project it really is great to do . With thanks and also I can be most certain countless people are grateful for the professional guidance .
Thanks for your comment Deisher. I learned from others and hopefully, others will learn from me. It really is a house of cards, ready to fall down at any minute. It is only through a group of loving people (paid and unpaid) that Aaron can have a life in the community.
Wow, Mary, you are a fighter. I can imagine you poring over documents into the early hours looking to understand, to find a foothold, to make things better for Aaron. This is not sexy, exciting stuff. This is hard, hard graft in the trenches. You are my hero! 🙂
You are so nice. Never underestimate a mama bear protecting her cub:)
I am proud my friends and I were able to figure out some things that stumped the professionals. We then taught them what we learned. (That was when the professionals liked me.)
Hi Mary. This is a very important post. I like how you touch on stuff that nobody seems to want to talk about. The one that hit home for me is the very strange math that is used by these agencies both to qualify and maintain eligibility.
The cranks at the top of these agencies I suspect don’t want for nothing. and thus they devise these mysterious formulas to entertain themselves all while pretending to want to help people.
My favorite game is the one I have encountered the very few times I was able to get a job. the game goes like this. At least in CA if you have SSGA you are not allowed to make more then $65/month. Anything above that and you have to deal with some rather crooked math. Also they will one month say they owe you money then a few weeks later they will inform you you owe them money. This can often go back and forth for several month. The data set is the same but how they work it I guess is what differs.
Well I have only one question. How did Aaron get work without this insane head game.???
Thanks for sharing you story Mary.
Thanks Gary, hope it made sense. There are so many ins and outs of the system–it is hard to understand.
There are some good reasons for this. I’m sure there are some evil bureauocrats who just like to make life difficult. But, most of the people I have met are really nice people who want to do good work.
Think about it. We want to protect the resources for people who really need them. There are scammers who try to take advantage of the system. So, lots of checks and balances is actually a good thing.
I agree that there need to be troubleshooters who help the consumer.
Aaron was lucky that when he was a student, he got a number of breaks. Aaron actually had a decent school experience. That is part of why it is so disappointing that everything fell flat when he graduated.