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Our House of Cards|Disability Style (Part 2)

Our House of Cards|Disability Style (Part 2)

Introduction:

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:


Our House of Cards|Disability Style (Part 1)

Dream Plan Part 4

Attack by Friendly Fire| People with Disabilities and their families

Have you ever rented a house or apartment?

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.

And he huffed and he puffed and the house fell down

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.

Keep Climbing: Onward and Upward

All my best, Mary

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12 Responses to “Our House of Cards|Disability Style (Part 2)”

  • Gary Jordon says:

    Mary the whole thing is completely insane. I have never heard of such utter nonsense. I sure there are resources. How else can we be maneuvering warships around Libya and all the other military activities.

    I can well imagine the big government honchos claim to be Christian. If they are then they have forgotten the words of Jesus regarding the care of the least of the human race. “whatever you do to the least of your brothers you do unto me.” Can’t comprehend the government big wigs. I’m sure they are not being forced to suffer indignity.

    I must be in the wrong part of California as I have never heard of supported living concept. That idea sounds at least a bit promising as does the notion of becoming a nonprofit.

    I sincerely hope things get better. I’m sorry I have taken so long to read this post but things are boring for me yet cra

    zy.

    • Mary E. Ulrich says:

      Thanks for you words of support Gary.

      Supported Living and Independent Living have different meanings in differnt parts of the country but indeed they are hopeful.

      There is a solution…there is a solution…there is a solution…

  • Hi to my dear friend, Mary,
    I am so sorry about all this commotion for you and Aaron and Tom. It never stops, does it.
    Some parents I know have become “family agencies” (thus cutting down government -:). I don’t know if they necessarily have “boards,” but they do have reporting etc. They and their child get to decide where they will live, who will support them etc. I can ask them to contact you if you like. Also, the notion of Supported Living is working (for the moment) here in California. People can actually have a life designed for an individual person – not what works for the local/state disability industry. They will have a conference in San Diego in April. Come see – and get warm and more hugs. Love, Anne

    • Mary E. Ulrich says:

      Dearest Anne. You would think I could have figured this all out by now. But, as you know, we keep running the race, fighting the fight and they keep changing the rules.

      I’ll check out your ideas. A pattern is starting to emerge.

      In the meantime, Aaron got new shoes today at Roncker’s Running Spot (funny how some things don’t change) and we had a lovely dinner (Tom fixed ribs with Montgomery Inn sauce–which you liked) and we went to WalMart to look for a juicer for his house. Tomorrow, Aaron will get to see Tommy, Ana and Isabella and we may even fit in a trip to Grandma’s.

      I need to stay in the moment–just make it one day at a time. And somehow this will all come together, right?

      Much love, thanks for registering for new updates.

  • I don’t have any ideas either but am thinking of you and willing a crack to present itself. With your determination you can widen it and slip through to the other side of this mess. Sounds a nightmare…
    Alison Golden recently posted..10 Questions I’ll Bet Justin Bieber’s Mom Never Had To Ask

    • Mary E. Ulrich says:

      Alison. What a perfect comment. I’m thinking of the Alice in Wonderland picture. Essentually, she slipped back through the crack and was then back in her regular world. I’ll do some visual imaging.

  • Dr. K. says:

    Here is something to consider…Although I have not personally seen this done, I have read about others who have had success starting a non-profit (which may be what you mean by “microboard”) the business of which is the long-term care and supervision of your son. The nonprofit will need to have a board which could be small and have people on it you and your son hand pick. Once you have your nonprofit status, the next step is to go through the process of being a paid provider within your state. This shifts the responsibility of recruiting and supervising employees and the day to day financial oversight of your son’s home to the Board. It also gives you access to the funding that is currently going to Annie’s employer. I have been told this process, from incorporation to vendorization, can take about a year. As a nonprofit, you can write for grants and receive donations that are tax deductible. It would be important to have someone on the board who is interested in overseeing the hiring/staff management process. I don’t know if it is possible, but I’d pay someone to do this if it is legal to do so. If it isn’t then I would pay someone off the board because it is without a doubt the most difficult part of maintaining your son’s separate residence. I also don’t know how these types of microboards interface with HUD. Hope this is helpful. I think you are on the right track with the microboard idea. Best of luck–

    • Mary E. Ulrich says:

      Hi Dr. K.

      You described perfectly what I have heard is called a microboard. David Witherow from Canada came up with the idea. While our county has had many speakers from Canada, I am told no one in Ohio has done one. So, it gives us a vision of what we might try to do. I didn’t know it took up to a year, but that doesn’t really surprise me. I never thought about the ideas of grants and donations. I’m not sure what that would look like, but it is a great idea.

      Thanks for sharing the information and showing your support. We need lots of ideas.

  • Becke Davis says:

    I wish I was a fairy godmother so I could wave a magic wand and fix all your problems. I feel so bad for Aaron, and even worse for you because you have his problems and so many more on your shoulders. Hopefully some creative thinker will read this and offer a solution. I know this isn’t much help, but I’m sending lots of hugs your way.

    • Mary E. Ulrich says:

      Thanks for the hugs Becke. you always know the right things to say. I hope this didn’t come across as a pity party. I’m hoping it tells a story and someone will have some ideas on how to solve things.

  • Dave Murley says:

    You mentioned Self-Determination. Are you aware of the national participant’s network?
    http://www.facebook.com/#!/pages/National-Participant-Network/170656802944513

    I have been doing this kind of stuff for 30+ years and the same questions and issues keep coming back. the truth is the system is not a service model, it is a business model. People and their families and allies need to get in charge of the money.

    • Hi Dave, great to have you here. I’m not sure our paths have crossed.

      I joined the site on self-determination, is there a summary of the Medicaid bill somewhere? It does sound like a step forward.

      As for getting the money to the families and eliminating the disability world “businesses”–any suggestions?

      Would a microboard or becoming a provider help? any models you recommend?

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