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”).
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????
I am going to try to describe what happened to Aaron, my son, when he was 36 years old. Aaron has the labels of autism and developmental disabilities. It is a complicated story. In the comments, let me know if this makes sense.
Click on the Following Articles for Additional Background:
If you answered “yes” you are like the majority of us. It is a typical, normal experience, right?
Normal World
You sign a lease.
You pay your rent on time.
You take good care of the inside of the house, providing the furnishings.
You pick up the sticks and papers in the yard.
You pull weeds, mulch and plant flowers.
You don’t put the garbage out until after 6 PM.
You get along great with your housemate and the neighbors.
Everything’s great, right?
Disability World
In Aaron’s case, he follows all the above, and has lived there for over 9 years.
In addition, since we figured he’d be living there the rest of his life (possibly 60 years) Aaron paid $1000 to build a patio on the back of the house.
Aaron got a HUD rent subsidy so he would only need one other housemate to help pay the rent. With his family, he even showed the owners of the house (a non-profit) how to get HUD approval.
Perfect tenant, right?
But, things are not perfect.
Because of his severe disabilities Aaron and his housemate need 24/7 support staff.
The company that manages the support staff has organizational, financial, and other issues (not unlike most residential companies).
So, though we love and trust Annie, our terrific head staff person, the company can’t ever seem to get additional staff to help–especially on the weekends.
The company continually blames Aaron saying his autism and intellectual disabilities are more difficult than other “clients,” so no staff want to work with him.
So we are stuck.
The county also says all the people who live in a house have to have the same residential provider.
So Aaron, Jack (his housemate/guardians) have to agree before we could change providers.
The county also tells us all the providers have the same issues, so it wouldn’t really make much difference.
So we suck it up, but NOT quietly
With tremendous effort and lots of positive thinking, we keep working to make things better, and fall into an okay routine.
The Plot Thickens
What would you think if one day your landlord calls and says, you have a vacant bedroom in the house and there is a homeless person with severe disabilties who needs a place to live?
Further, the county is short on money and passed a regulation saying all empty bedrooms will be filled.
And oh, since you don’t own the house–tough shit!
Oh, and by the way, the residential company you endure will now be in charge of three people. So if you want to change companies you will need not two–but all three people/guardians to agree before you can change.
They do promise additional quality staff for a couple hours in the morning and evening to help get everyone dressed, bathed, toileted, fed, and groomed. But we have been with this company for over 9 years and know they often make promises they can’t keep.
Again, these are not evil people, they just don’t have the support system THEY need.
The Perfect Storm
If this was a Stephen King novel, at this point in the story there would have to be some unforseen twists to really make things interesting.
Since, being a person with a severe disability isn’t drama enough, sure enough The Perfect Storm overturns the barely floating status-quo boat.
1. We still have trouble finding adequate staff.
2. Jack, Aaron’s housemate, “falls,” breaks his leg and is now using a walker (with great difficulty).
3. The replacement staff are “trained” by the supervisor over the phone. (Yep, couldn’t make this up.)
4. Aaron’s behaviors are increasing and when switching to new medications, the new staff (trained over the phone) accidently gives an overdose of Zoloft.
5. The county, like all government agencies, is desperate for funds.
6. The visit for the NEW housemate is set up for Tuesday night. Like it or not. (another post)
7. Make up a couple more dramas and they are probably true.
Discussion
Since the county and the residential provider both profess they follow the principles of normalization, inclusion, self-determination and John McGee’s Gentle Teaching…. let’s start there.
Normalization:
A normal person rents a house or apartment:
Unless they violate the terms of the lease, the landlord doesn’t care what you do with the rooms in the house. In fact, they would only care if you brought in an extra person.
A person with a disability rents a house or apartment:
The landlord can demand you put a perfect stranger, with severe disabilities, in one of the rooms.
Even if you say, “These houses aren’t private”– can you imagine going to any other group of people in HUD owned homes, people in the projects, people who are poor, elderly, unemployed, needy and telling them they HAD to add a stranger to their household?
Hey, most people don’t even want to have relatives and people they know move in. Strangers, I don’t think so.
Inclusion:
The house is in a residential neighborhood of single family homes. The houses is small and not zoned for a group home.
Adding one or two more housemates will mean there are twice as many cars, twice the number of staff, twice the number of pick up and deliveries.
One of the reasons the neighbors have been so nice, is they got to know Aaron and Jack. Our efforts to blend into the neighborhood and keep the house looking good has brought a level of acceptance. There is a delicate balance for inclusion in the neighborhood.
Self-Determination:
It seems when there are budget cuts–self-determination and individual choices are scratched off the books.
Aaron
There is no way adding a new housemate is in Aaron’s best interests.
Aaron and Jack have had a terrible time getting quality staff, period.
Few will take them into the community. As Aaron’s behaviors have deteriorated in the last year and he is on more medication, there is less incentive to take him even for walks in the neighborhood, as well as into neighborhood stores…. Aaron is already isolated. Adding a third housemate will make this even more difficult.
Gentle Teaching:
Dang, let’s not even go there.
Summary:
This isn’t all a surprise. In 2009, my husband and I challenged the county board’s authority to do this. Earlier this year, we were alerted this might be happening. See above related posts.
I keep hoping there is some sort of HUD requirement saying the government can’t just bring strangers to live in your house. (There is that constitutional protection against the government forcing people to house soldiers.)
I keep hoping some sort of civil rights, or just human compassion will prevail.
I keep hoping the fact that there have been two MUIs in the house in the last couple months (broken foot and overdose) will give people a clue that the house is in crisis.
I keep hoping the history of lack of adequate staff will also tell people that poorly paid and trained staff taking care of two men who need total care is a difficult job. Adding a third person is ridiculous.
I keep hoping that SOMEONE will notice the company in charge is filling for bankruptcy–duh! Do we really think it is safe to put MORE people in their charge?
Strategy:
We are using every avenue to fight this forced placement.
We are also trying to get the county to think outside the traditional funding box.
For years, we have heard about micro-boards, foster care, private providers, HUD houses, community initiatives, pairing people with disabilities with people who are poor, displaced, out of work….
Where are the creative thinkers who used to work with us? Where are the professionals who are being paid to problem-solve? Where are my friends who I trusted and gave years of volunteer time?
God knows I cry for the poor man who needs a home. If we weren’t in such turmoil, I’d personally offer to help him.
God knows I also hear from my relatives and neighbors that the government is too big and needs to be cut.
God knows I even hear some people tell me, “You created this defective child, it is your responsibility to take care of him.”
Please Comment:
Anyone have any ACES up their sleeves? Any trump or wild cards? Hey, I’ll even consider some creative card tricks *wink wink*.
Thanks to everyone who has sent such kind notes of encouragement. We will survive. Aaron will survive.
But, geez louise… I figured out the Medicaid Waiver, I figured out the HUD rent subsidy and now people all over the area are using those supports. I’m exhausted.
We’ve taken Aaron home with us 15 of the last 30 days because of the turmoil in the house…And that was before the notice this week of the new housemate. Share your thoughts.
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.
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.
Resident Home
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….
Zoning
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.
HUD
It took me over 3 years to figure out the HUDfunding 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.
Medicaid Waiver
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.
Dr. Annie Abram interviewed me about Special Education Inclusion on her weekly blog talk radio program: “Ask Dr. Annie Abram.”
Dr. Abram talks about “Parenting Across Generations” and has been doing several topics on autism.
Check it out. Tell me what you think in the comments section. It really has been a journey for Aaron–a person with a disability, for me–the parent of an adult with a disability, and for our family. And, the choices and decisions we made when Aaron was young definitely influence our choices and decisions now that he is an adult. In my heart I know we took the road less travelled and it demonstrated to the world that inclusion is a civil right–and Aaron is a full citizen.
Inclusive Education
Expecting Academic Achievement in General Education Curriculum
April 25, 2013
2-3:30 p.m. ET
This interactive training session provides teachers with a structured time to think and plan to enhance their students’ participation in the general education curriculum. Many teams have become outstanding supporters of inclusive education. However, what are the students’ goals in that setting? How much involvement do they have with the general education curriculum? What are the goals for the student’s academic achievement? Have we fully considered all the ways the student can attain access to and demonstrate an understanding of the general education curriculum?
Presented by Stacey Skoning, University of Wisconsin Oshkosh, and Denise Clark, University of Wisconsin Oshkosh.
TASH Members $50 (Individual) $80 (Group)
Non Members $70 (Individual) $100 (Group)
This is an inexpensive way to get the latest information for an inservice or parent group.
• Thriving in Transitions: Self-Directed Living, It’s Never Too Late! (Community Living)
Thursday, May 9 @ 1 p.m. ET
• Building and Sustaining our Communities through Time Bank Exchange (Community Living)
Thursday, May 16 @ 2 p.m. ET
• An Overview of Person Centered Planning: The State of the Art (Community Living)
Thursday, May 30 @ 2 p.m. ET
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Free Ideas for Inclusive Classrooms
If you want inclusive ideas for your child or your classroom, Paula Kluth is the best. Sign up for her blog. Paula Kluth
