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Our House of Cards|Disability Style (Part 3)

Beware the House of Cards

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

Better than Church

Playing for Change

What I loved about this video is that musicians from all over the world are playing the same song. Giving the same message. Gritty to sophisticated, washboards to violins–it’s the same song and message.

Kind of like all the people who believe in inclusion are playing the same song and giving the same message.

Kind of like all the people around the world who are working to make the world an inclusive place for ALL people, including people with disabilities.

The Inclusion Network

Check out The Inclusion Network (click here) hosted by Jack Pearpoint. There are many friends there from TASH, Arc, and advocacy days-gone-by who have stood by me and other parents of people with severe disabilities. Just a few are: John O’Brien, Connie Lyle O’Brien, Barb McKenzie, John McKnight… and Gail Jacobs, who shared the above video.

Standing with One Person–and Many

Our 35 year journey toward Inclusion has been long and hard. And when we look at Aaron’s current life, we don’t seem to have made much progress. We’ve done three MAPS and person-centered-plans but they just ended up in Aaron’s chart with a bureaucratic check-mark that they were completed.

We continue to do all the right planning, we take the right risks, we fight like the devil to get good programs, we attend countless meetings, join the right groups, and work with strong visionaries to build a better world for all people with severe disabilities. But it’s not enough.

The journey continues with every breath we have in this life but unless Aaron dies before we do, we need to plan for an extended journey that continues indefinitely after we are gone. We make our choices and face our battles: the big ones, the little ones… we accept the compromises we have to make to survive. We keep believing. There is no other choice.

We stand on the shoulders of the parents, self-advocates, caregivers, teachers and advocates who came before us and bought our opportunities with their sweat and blood. We continue their work. We attempt to build a inclusive community which has never existed in the history of the world…and then we will pass on this legacy to the next generation.

When all is said and done, we can hold our heads high and shout to the world, “We stood together for Inclusion.”

Our family stands for Aaron in our community. Across the world others, in their own way, in their own community, with their own child, or friend, are also standing for Inclusion.

And each day, we touch the life of one person–and many. We make things a little better than they would have been without our work for our one person–and many. And that gives us hope and is our life work.

So thank you dear friends. Thank you, also, to all the people who are reading this who I have never met but who are working for an inclusive world where everyone belongs.

Thank you for standing by me. Thank you for standing by Aaron. Thank you for standing by all of us. God Bless.

Add your voice in the comments:

Who are the people who stand by you?

Keep Climbing: Onward and Upward

All my love and gratitude,

Mary

Remarkable Parents and Advocates who Never Give Up

Parents and advocates of people with disabilities have a love-hate relationship with professionals because they don’t give up.

dad, mom and me - 1969
Creative Commons License

photo credit: freeparkingFamily portrait with mother, father, two small boys and baby
Creative Commons License photo credit: Powerhouse Museum Collection

I’m Thankful for Parents and Advocates

You know the ones.

They never give up.

They ask the tough questions.
They demand answers.

They show up at budget meetings and want copies of the agenda and handouts.

They show up at board meetings and introduce their child.

They study the friggin’ law and quote it at you.

They call the State Department when they can’t get what they want at the local level.

They are politically savy–not politically correct.

No matter how many times we tell them, “You are not credible because you are too emotionally invested,” They won’t give up.

They don’t care the budget has been cut.
They don’t care we are sharing offices and there is no toner for the copy machine.

They aren’t reasonable about “waiting”… or accepting excuses for shoddy performance…or people who don’t call them back.

They embarrass us by going to meetings where they are the only unpaid person in the room, and they are more prepared then we are. And they go to more meetings… and more meetings.

They just won’t give up.

If we try to slip one by, it’s like they have built-in radar. They just seem to know when we filled a staffing gap with an inexperienced person, or if the caregiver had a beer.

If we tell them the “research says”–they want to see the research.

They give us copies of new research.

They call the researchers–collect.

They even have the nerve to point out flaws in the research studies and want their child in the next study.

If we tell them they can’t possibly understand the research, they read books, network, take courses until they become the experts. Some even get their Doctorate degrees.

They insist we don’t give up.

When we do something right, they tell us we are wonderful and they are thankful, BUT….

Damn, there is always a BUT.

When we tell them to “Trust Us,” they smile and tell us that is like asking GreenPeace to “trust” the oil companies.

They just won’t give up.

Damn, they drive us nuts….
But we know that after we retire and get our pensions, they will still have to be harrassing our replacement because their child will always need someone to advocate for them.

We respect them because we know they force us to do a better job.

We know that when they are helping their child, they are also helping all children.

We love them because their motives are pure and they make the world a better place.

And most of all, we admire them because they don’t give up.

This is dedicated to:

Mary and Oliver Triplett

They were the parents who ignored advice from the professionals and kept their son Donald home from the institution. Their son became the famous Donald T. in Leo Kanner’s research article identifying the phenomenon he named autism. This article in The Atlantic shows how Donald is living today. Though the story is about Donald–I think it is his parents’ love and advocacy that is the REAL STORY (click here).

Anne McDonald and Rosemary Crossley

Anne McDonald and Rosemary Crossley kept teaching us all about the right to communicate, and they didn’t give up.(click here).

Jon Morrow

Jon Morrow is an associate editor on CopyBlogger whose blog article: On Dying, Mothers, and Fighting for Your Ideas went viral. He is a success story and has done amazing things, but when you are reading this, think of his mom.
(click here).

Nina and Joseph Marcellinos

Nina and Joseph Marcellinos knew the word “retarded” hurt their daughter’s future–and they didn’t give up until they changed the Federal Law. (click here).

Tell us about your experiences:

Do you know any remarkable parents and/or advocates? Do you love, hate, respect, admire, despise them?

When you are reading about great advances for people with disabilities, the elderly, children… do you look underneath the headlines and see the parents and advocates? Have you done something where, against the odds, you didn’t give up?

Keep Climbing: Onward and Upward

All the Best,
Mary

“Telling Your Story”| Free App for Advocates

Partners in Policymaking Class of 2012

The Minnesota Governor’s Council on Developmental Disabilities (MN DD Council) does remarkable work. On this blog, I often reference the Parallels in Time (history of people with disabilities) and their Partners in Policymaking Program.

This week MNDDC announced a new FREE app called “Telling Your Story.” Already it has being downloaded around the globe.

EVERYONE has a story.

EVERYONE wants to solve their problems.

EVERYONE wants to be heard.

BUT, SOME People need extra support, skills and confidence to tell others what they want and need.

“Telling Your Story” is for Everyone

Everyone knows personal stories are the most powerful way to influence policymakers and legistlaters. Stories make the rules, regulations and policies become real.

The new “Telling Your Story” app for IPads is an organizational tool to make it easier to tell those stories.

It was created to help adults with disabilities be an active part of the democratic process and find their voice, their confidence and then–their Policymaker.

The “Telling Your Story” App is easy to use and is written for self-advocates–but mom, dad, brothers, sisters, grandparents and allies can use the same template.

The simple format helps advocates compose and practice the personal story they’ll present to elected public officials or other policymakers at all levels of government.

Some of the self-advocates learned to use this app in the Partners in Policymaking Program.

The app guides users through the steps:

–introducing yourself

–identifying the specific issue

–presenting a compelling personal story in text

–creating an audio recording to practice and rehearse their story

–selecting a photo they may wish to include

Budget Cuts| It’s Personal

Here is an example of one self-advocate’s compelling story using the new app. She is explaining how a recent budget cut affects her life and will cost the state more in the long run.

This is MY STORY:

My name is Thea Graham. I live in your district. I have been waiting all year to come to the Capitol to meet with you. I want to tell you a little about myself.

Currently, I live with my mother. She is very good to me and I love her a lot. I do know that I will not always be able to live with my mom. We have been looking at different residential support options to see what would be the best match.

I know when I move out, I will need staff to support me in using my “wise mind” since I can get upset. Staff will also need to help me with making sure that I look nice since this is very important to me. They will also need to help me drive to the doctor and help me understand what the doctor is saying about my health needs. My mom does all of this for me now.

I receive services at Merrick, Inc., a day program in Vadnais Heights. It is here that I have learned to use my “wise mind” more and more. Before I would swear, yell, and hit people when I got mad—now I use my “wise mind”. This means that I “stop, calm down, think, and come up with another solution that will help resolve the situation”. I do the following jobs at Merrick: pick up plastic recycling at the Maplewood Mall, package medical supplies, take Styrofoam from Culligen caps, and shred pull tabs. I love to make money and work like everyone else does. My job coach Kathy and “Christian” support at my job and they tell me I am doing a good job not only with jobs but how I handle things that come my way. Another thing that I like about Merrick is that I have learned to speak up for myself—doing so assertively not aggressively. Above is a picture of me running for office at a Wednesday morning self-advocacy group meeting. One of my role models is Rosa Parks and the difference she made on the lives of others. On Martin Luther King Day, I have been Rosa Parks showing her role in the bus boycott play. It makes me feel proud to be “Rosa Parks”.

I feel that I have come a long way since coming to Merrick over 13 years ago. However, my CSSA funding for Merrick was significantly cut as of January 1st.

Instead of receiving services for 5 days per week, I only have funding for 2 days. This is a huge burden on my elderly mother who now is taking care of me the 3 days I am not able to attend Merrick, Inc. My mother is not in good health and I am worried about her.

If I am sitting at home alone, I am not making money. I am not at my job where I am relied on to do my work. I am not continuing to build on my skills to cope with being frustrated and angry.

Please hear my story and know that I can’t sit at home. If I end up in crisis, it would cost the state a whole lot more than it would be maintaining my day program services. It is the proactive thing to do—it is the right thing to do.

Download Free App for IPad Here

Click Here for free “Telling Your Story” App. for IPad 2 or newer

Click Here for more information on the “Partners in Policymaking” Homepage.

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How can Professionals Use this App?

Many children and adults with disabilities and their families are going to need technical and emotional support for using this app.

Some will not have an IPad available. Some will need coaching or help in transcribing their words onto paper. Some will need encouragement to overcome fears and answer questions.

Transition and High School Teachers:

There could be all kinds of uses for this app. especially in a Problems of Democracy class or in any advocacy or problem solving situation. I would think the format could be adapted for completing many general education projects and assignments. This could also be part of Transition or Speech Language Communication session (social stories?). Learning to use this technology and format would make an excellent IEP/ITP goal.

University Professors:

University students in Introductory to Special Education or Geriatrics, Disability Studies, social work, legal or medical professions could use this app to interview and help support a person who struggles in Making Your Case and get their thoughts organized. This app could create cooperative learning and inclusion opportunities.

This would also be a great project for a Special Olympics Buddies, SCEC or Service Learning.

There could be research potential for all majors. Does this app empower and support vulnerable people? Does this make a difference?….

Self-Advocacy Groups:

This is a gold-mine for empowerment, self-determination, voting, citizenship and lessons on democracy. Veterans and senior citizen groups might also be interested in grants or projects for their own members.

Direct Care Workers:

I can see this being used at places of employment and leisure/recreation to help people tell their wants, needs, likes and dislikes and get a better quality of life.

What do you think?

Will this app “Telling Your Story” help children and adults with disabilities tell their own stories? Would this app make it easier for someone you care about? Do you think it is important that policymakers like school board members, county, state and national legislators hear from the people in their own voices? Tell me, will you download this app and use it?

Keep Climbing: Onward and Upward

All my best,

Mary

Related Posts:

Partners in Policymaking| 25 Years in Making the Government Work

Autism| A lot more needed than awareness

Remarkable Parents and Advocates who never give up

Communication| “A Lottery Winner in Life”