Posts Tagged ‘Advocacy’

Helping or hurting?

I am going to update some of the better articles I’ve written for my classes, parent newsletters and magazines. Hope you enjoy them.

Since Aaron was young, the language has evolved. When this story took place they used the words, “mental retardation,” then the words become “developmental disabilities” now it would be “intellectual disabilities.” I’m using the original words as I experienced them.

“Help the mentally retarded! Help the mentally retarded!”

I had just bought some 99 cent grapes, a pound of hamburger, loaf of bread and a couple other items to make dinner for my family when I was met at the door to the grocery by three older men wearing brightly-colored vests and hats with tassels. They were holding little cans and urging shoppers to “Help the mentally retarded!”

I grabbed my groceries and, not even looking up, hurried to my car. As I passed, one man said (in a very superior) voice, “Not all babies are born healthy.”

I felt my face flush and when I paused, he went in for his killer argument, “We aren’t ALL blessed with normal babies, you know!”

Well, that did it. Turning, I said, “I have a child who has the label of autism and I think it is very condescending to have to beg to raise money for quality services.”

Well, the men and their swinging tassels all stopped and circled me. They were aghast. “What do you mean?”

I thought about just grabbing my bags out of the cart and running to my car, but instead looked him right in the eye. “People who are retarded need real opportunities. They can be valuable workers and contribute to society. Retarded people as objects of the mercy of others reinforces the negative stereotypes of the past. In fact, now we call them people with intellectual challenges and don’t even use the word retarded.”

“But honey, last year we raised over $300,000 in our state.” The man straightened his hat and looked like I had sucker-punched him in the gut. “One-third of that money is going toward adding a retarded adult wing onto Children’s Hospital. Also we began a new women’s group home. We stand here in the rain and cold to help. We are volunteers. We don’t get anything out of this.”

At the entrance of the store a crowd was now gathering. I knew he was probably a nice man only trying to do his Christian duty. He was sincere and dedicated, only ignorant of the principles of normalization and inclusion. The staring and frowning faces of the crowd told me they were on his side. I half expected flying can goods to start stoning me. After all, who takes on God’s Knights right in front of Krogers?

I certainly didn’t plan on making a scene. So, giving the man a smile, I just said, “Well, I serve people who have developmental disabilities in other ways” and tried to push my grocery cart around him.

He gently put his hand on my shoulder and assured me God would take care of me and my son. Then, to show no hard feelings, he put three Won’t you give an extra inch? wooden rulers into my bag.

Well, once again I had done it. My husband is always telling me to lighten up and get a new hobby. For Pete’s sake, here I was in a confrontation in front of the grocery store.

Perhaps next time I’ll just drop a quarter in the cup and make the man happy… but… in the meantime, I’ll work “inch by inch” to replace the poor helpless eternal child stereotype with an image of a citizen with real value, dignity and rights.

Share Your Thoughts

How would you handle this? Have you had similar experiences?
The kicker is that Children’s hospital no longer even wants to serve adults with disabilities. Do you think that is a good or bad thing? Also, in 2012, the Knights would be saying, “Help the children with intellectual disabilities,” right?

Writing Changes Lives.

Each day we read stories of abuse and neglect of people with disabilities. Today it’s a father telling the story of his ten year old son with autism who wore a wire to school and articles about Dr. Phil’s show on mercy killing.

This blog, Climbing Every Mountain (CEM) is one small voice for the rights, dignity and community inclusion of people with severe disabilities and their families. From an inclusive paradigm, I try to make sense of what is happening to our vulnerable children and friends. I hope to use my writing to tell the story, problem solve, teach, inspire and keep the dream of a good life alive. I hope to change lives.

Whether I like it or not, I feel my life work is to keep writing about my son Aaron, who has the label of autism, and other people on the fringe of society.

Our hope for a better future comes from feeling empowered to make a difference, not waiting for others–if there is only silence or chaotic noise nothing changes.

I’m convinced communication and writing are the tickets to change. So the writing better be damn good. Right?

Damn Fine Words (link) is currently having a writing contest.

Damn Fine Words (link) is a course on how to improve writing skills for blogs and online businesses. So of course, you enter the contest by writing a post on your blog. (Don’t you love functional assignments?) It is taught by the talented James Chartrand of Men with Pens fame. I want to win a scholarship to this class, so this post is about “Why becoming a better writer could change my life” and “Why writing is important to me and my business.”

Adaptation and Accommodation are a Way of Life

CEM readers are important, the focus and integrity of staying on the topic of inclusion is important. I just can’t jump off on a contest tangent. Hey, all that guilt!

But special educators are crafty people *smile* who learn how to adapt, right? So, I’m going to give my contest information in the traditional I.E.P. (Individualized Education Plan) of Goals, Action Steps and Reevaluation to demonstrate how the I.E.P. Process is useful in not just Disability World, but in real life.

Evolution of my Thought Process about Writing

I.E.P. Vision, Goals, Action Steps, Evaluation

Vision: Write about living in an inclusive world where everyone belongs and individual differences are valued as strengths.

Book

Goal 1: I wanted to write a BOOK about Aaron’s story and talk about inclusion—not just to special education types or the learned choir—but to normal people. Makes sense, how are we going to be inclusive when we only talk to each other, right?

Action steps: Five years ago, I entered a contest with Writer’s Digest. (See a pattern here?) I won a subscription and began to relearn what I knew about adjectives, exclamation points and the basics of grammar. I learned about voice, point of view, plots, storytelling, story structure…. I joined WD’s Forum and learned about editing, publishing, authors and these new things called blogs and social media. I met writers who recommended blogs like Men with Pens. I joined a local writers’ group.

Evaluation: I wanted my writing to be powerful and inspire others. Yet, the more I learned, the more I needed to learn.

Evolution One: Book to Blog

Revised Goal 1: I wanted to share Aaron’s STORY and talk about inclusion with as many people as possible. (Same goal only forget the book format.)

Seth Godin (blogger extraordinaire) suggested writing a blog instead of writing a book: Traditional bookstores and publishing houses were closing; Blogs could immediately reach people around the world; Posts would be available indefinitely; Blogs could become online businesses; and, It’s possible to continually update the story.

Action Steps: I subscribed to about 20 blogs on writing and did an ecological assessment of how to be a good follower, tribe member, “true fan.” I discovered blogging was damn complicated. I put in a Gladstone’s thousand hours of study–I needed to learn about writing sure, but also about branding, design, marketing, small business, technical “backend” systems, and a whole new language of SEO, HTML, B2B, copywriting, white papers, sales letters, analytics, “black hat,” “long-tail keywords”… a new vocabulary and alphabet soup that competes with special education in its complexity.

Evaluation: A blog made sense for a story like Aaron’s, which continues every day. I needed to increase my learning curve and find mentors. So, same goal of spreading the inclusion message with words, different format–book to story to specific blog and potential business.

Evolution Two: Climbing Every Mountain Blog

Revised Revised Goal 1: I want to share Aaron’s STORY and create an online community for people who care about adults with disabilities and pay its expenses. Again, same goal, specific format and possible business.

As Special Education has been attacked and adults with disabilities are given few options, even an idealist like myself knows the hope of an inclusive community has deteriorated and become even more elusive but… the journey continues. We can’t give up; we have to keep climbing that mountain.

Action Step for Aaron’s inclusion: (Walking the Talk) In the last couple months Aaron moved into a new home closer to ours, began a new day program and new residential provider. I made changes in Aaron’s life and showed our county how to start some inclusive programs. This gives me the credibility and authentic voice to share my ideas.

Action Step for blog: After much encouragement (thank you everyone), I finally began my blog http://ClimbingEveryMountain.com in July, 2010.

Evaluation: Most feedback has been positive, but a good friend said she quit reading my blog because my posts were negative and focused on my son’s “sucky life” when I should only be talking about the good things that happen to him—that comment paralyzed my writing.

My previous lack of confidence, self-esteem, courage, technical skills and motivation are nothing compared to that bullet to my heart. Is she right? Is my writing helping or hurting others?

Success Stories:

The good news is:

I’ve had amazing visitors who are leaders in the fields of both Inclusion and Social Media.

Professors from two university special education programs assigned my blog for their classes.

A state autism agency wants to feature my blog on their site.

Statistics:

As of today, I have 135 subscribers and have written 137 posts. I’m proud of my content, but there are few readers with almost no comments or discussion–certainly not the “basecamp community” I had hoped for.

In April CEM averaged about 30 readers a day and visit duration was 1:47 minutes. There is about an 80% bounce rate.

Each post takes me about 6-10 hours to write and format.

I’ve taken online courses, and as I recovered from recent health issues I identified several problems: no niche viability, no products, and I am the most untechy person you will ever meet.

How Damn Fine Words (link) could change my life.

Specific ways DFW would help be become a better writer and change my life:

I want to write powerful and important stories with information which can change people’s lives. DFW will teach me better ways to tell the story and teach information

I have an important story that only I can tell. DFW will give me the external validity that I am on target and my writing does reflect my mission. The members of DWF are not part of special education or Disability World, so their honest objective advice will help me evaluate the success of my message for a general audience.

My story is about the journey, it does not have a typical happy ending (no one is cured or ever will be). So I need to have humor, optimism and inspire others in their own, equally difficult, journeys. DFW will suggest guidelines and give me objective advice regarding finding a balanced approach.

When my friend says my posts are negative, is she right? Am I wallowing in a pessimistic attitude and self-pity? DFW and the student forums could give me a clue. This would change my emotional life.

Because of the complexity of the message, I need to write simply, with clarity and stick to one message at a time. DFW will teach me achieve message discipline.

My blog needs to be technically sound. DFW will give me technical advice i.e. I have no idea how to create bullets or get to be an Amazon affiliate.

I want to have great content for the state website. DFW will help me structure my posts and hopefully speed up my writing process.

I have several articles I could make into eBooks or PDF handouts. DFW could give me advice.

I would like to create some video and other media for my blog. DFW could give pointers and the confidence to stretch my skills.

I would like to learn more about becoming a freelance writer. This new career would significantly change my life. DFW has that information.

I would like to monitize my blog enough to cover expenses and perhaps make purchases like a video camera and document scanner. DFW might be able to help me.

Bottom Line:

In Special Ed lingo, Damn Fine Words would be the related service.

In regular words, Damn Fine Words would help me up my game and ease my anxiety:

Are my current efforts a waste of time and energy?

Am I helping people get the information and encouragement they need to change their lives?

Am I good enough?

How can I get better?

Damn Fine Words would help me answer these questions and move forward.

I think Damn Fine Words (LINK) is the answer. I’d like quick miracles of course, but it would be an honor to mentor with James and learn whatever she thinks is necessary. I like to be around people I consider “THE BEST.” James has great values and experience. I’ve already learned so much from Men with Pens. I like to learn. I like to be in classes where there are high expectations, structureed lessons, deadlines and a teacher who, if needed, will kick butt.

I don’t deny I need the confidence, self-esteem and encouragement to take risks. I don’t deny that I get scared that if I fail in this, I will need to rethink my life goals and start over.

My outcome and true measure of success would be to end the Damn Fine Words (LINK) course with new knowledge, new friends, something to sell on my blog and a guest post ready to submit to Men with Pens. This would indeed change my life.

Dear Readers of CEM,

You might also want to enter this contest. Many of you have talked about starting your own blogs. Need is relative. I have more financial resources than some, less than others. I’m sure there are others who are more worthy.

My thoughts in this post on writing may or may not have been interesting to you. But at least you know I keep trying to get better and see the evolution of my thinking on writing. Only time will tell if I make it from the caterpillar to the butterfly.

I hope you will also keep journals and document the stories in your lives. Our silence gives the power to the people who are lazy, abuse us and reinforces the status quo. Can there be any more important goal for each of us then to tell our story and share the journey? Our children’s future depends on our writing, our voices, our advocacy.

Keep Climbing: Onward and Upward
All my best, Mary

This story is from 1981 when Aaron was 7 and Tommy 5. We were in the middle of our lawsuit against Cincinnati Public Schools to allow Aaron to be able to go to public school. Enjoy.

At the end of our street is a pond. Our family often takes walks down there to see the ducks and give them bread crumbs. One day last summer, an old man was down there and said: “Did you see the handicapped duck?”

Well considering I was pushing my seven year old son with a severe disability in his stroller, and considering the 24 hours a day I spend thinking about people with disabilities–this was really too much.

The friendly man went on, “Probably a frog ate his foot or maybe he caught it on the fence…”

Sure enough, there were about 40 ducks and one duck was missing his foot and about one-half of his leg. The duck hobbled toward us but when Tommy tried to pet him he scrambled for the bread crumbs with the rest and then swam away.

Before we left, we did throw him some extra bread crumbs just because we wanted him to know we were friends who understood life’s little extra challenges.

I went home and joked to my friends that at least some humane society didn’t come and set aside a special pond for disabled ducks, start a supplementary training program and segregated nesting area–or some exploiter didn’t take him to Utah and enter him in some freak show for tourists.

We checked in once in a while over the winter, but I really was a lot more worried about people with disabilities than the ducks. We were trying to mainstream Aaron, into a public school. (This was before “inclusion” was thought possible.)

Yesterday the weather was warm so we walked to the pond and saw there were only about 15 ducks. We were only there a minute when that same man came running down full of concern. He told us someone was catching the ducks, putting them in plastic bags, throwing them into the middle of the lake and then watching them drown.

We were shocked. Who would do such a thing?

Meanwhile, the few ducks that remained came swimming toward us looking for the bread crumbs. Guess What?

The “handicapped” duck was among the survivors.

I’m not sure what this all means or why I thought to write about it, but with all the cutbacks and anything else they can think up–I think the duck gave us a message–we’re going to make it. There are some mean horrible people out there, sure. But there are also wonderful people like the man who cared for the ducks. There is risk being in the community–but that is also where there is safety.

This week Aaron learned to peel his own banana, he went boating and he saw a “handicapped” duck that was smarter than the non-handicapped ducks. We also just need to get smarter.

The dream… it lives!

Quiz: For those of you who read the story about the difference between disability and handicapped (click here) and tell me. Did our duck with the one leg have a disability, a handicap, or both?

Share your Stories of Hope

What helps keep your dreams alive? Any duck or pet stories?

We have a house!

Amazing News: A House and Roommate| Part 12

Miracles Do Happen:

Last week, a non-profit agency bought a house near our home. They will accept Aaron’s HUD housing choice rent voucher.

Today, we met with a young man and his mother and we think we found a roommate match.

Miracle Triangle:
House/HUD–Roommate–Residential Staff

For those of you who have been following our journey to move Aaron, our son with the label of autism, home to our county, this is Part 12. You know how complex and difficult this has been. Here is the link to Part 11: 1st miracle| Aaron needs a Roommate| Part 11.

Even with the two miracles, don’t breathe yet. But we now have two pieces of the triangle in place.

The third part of our miracle triangle is great staff. I’ve talked about the critical importance of staff in Caregivers: Part 1, 2, 3

But as Scarlett O’Hara says, “I’ll think about that tomorrow.”

Here are the details in two emails: one from early this morning (2:30 AM—mothers never sleep); the second is after our dinner meeting (9:00 PM—mothers put in long days).

Task Analysis for Monday Morning:

From: Mary E. Ulrich [mailto:marye.ulrich1@gmail.com]
Sent: Monday, September 26, 2011 2:28 AM
To: Everyone I could think of who might be part of this move
Subject: Aaron’s house

Hi Everyone,

I met with the director of the non-profit on Friday. He said they closed on the new house last Monday and so we can begin the countdown to a move-in date of Nov. 1. Yea, Yea!

Thanks to the Non-Profit and the County Board of DD for making this new resource available to Aaron and our community.

So now there is much to do to be ready by Nov. 1st.

HUD

The director of the non-profit is finalizing the paperwork to become a HUD landlord in W. County. There will need to be an inspection and he is negotiating the rent…. As soon as we get Aaron’s roommate, we will be applying for three people and a 3 bedroom subsidy (Aaron, roommate and caregiver.) This is what Aaron has had in our past County for the last decade, so I think this should be pretty cut and dry. It is an accommodation under ADA, but is different than the rules for HUD’s definition of “caregiver.”

We have received HUD extensions until Oct. 31st. It has been a lot of running around between counties, but Debbie and Wendy have both been wonderful caring professionals. Thank you for helping me figure out the system.

Notices

I need to give notice to everyone in our current county and the current provider by Oct. 1st, which is fast approaching.

I’ve given the notice about moving to Aaron’s current landlord.

This will not come fast enough. Aaron had another “unusual incident” last week where he was not groomed for his day program. (The food he got in his hair on Monday was still there on Wednesday—the staff felt he had not had his hair washed in two days and it was dirty and grimy.) Also, Aaron is running out of transportation money to his day program.) Tom and I are taking Aaron up on Monday mornings, and usually picking him up one afternoon a week.

House Remodeling

The director of the non-profit says they closed on the house last week and will begin the remodeling shortly. They are starting with some tree trimming because of the possible danger and then will refinish the floors in the Living Room, Dining Room and move on to the bathrooms. If everything works out well with HUD and we get the caregiver’s designation for the third bedroom then there may be enough rent money to justify new windows (the current windows are casement windows—inefficient and BAD). They are reluctant to begin the bathrooms until we know who the second roommate will be. This makes sense if we want to make accommodations which are specific to the person needing the bathroom.

I think this is a great way to begin because we will want to show the community we will be great neighbors and take care of the house before the rumors begin that two men with intellectual disabilities are moving in. This is what worked on Aaron’s current residence and I have too many memories of Stetennius, Five Mile and other hearings from worried neighbors. It is a mature neighborhood, I don’t expect any problems, but we want to make a good first impression.

Tom and I will be planting some mums and have a couple inexpensive porch chairs to make the place look lived in. The house has been vacant for a long time so a few improvements should impress the neighbors.

Potential Roommate

I am hoping to hear from the parent of the potential roommate today, and then can set up some visits. This is the next big step.

Then, I understand from the new county board, we will finally get a case manager.

Transition for Aaron

We have been driving Aaron by the house and telling him it is his new home, but I can’t imagine he understands what we are talking about. I’m worried he will miss his roommate of the past 13 years and am sure he will be confused. I want to start some visits to the house as soon as possible. The more familiar he is, the easier the transition.

I’m hoping he will get to have a couple meetings with the new roommate and new staff as soon as possible.

Furnishing House

We also need to figure out how to furnish the house. I have begun to take donations from relatives. We probably have about $1000 set aside.

Tom and I furnished Aaron’s first two residences. We are told that if the furnishings belong to Aaron he can take them with him, but I am uncomfortable just taking the silverware out of the drawer and telling them, “Sorry, this belongs to Aaron.” We have enough problems with the current staff as it is and we don’t want to cause problems for Aaron’s current roommate. But, it is expensive to start a new house from scratch.

My family will be having a shower to donate items sometimes this month. I will have to coordinate with the director of the non-profit when we can get a key and get into the house and it’s not a Bengal’s game (if there are any Bengal fans left in Cincinnati by then).

I’m hoping we can set a corner of the garage or one bedroom to begin collecting items.

I began with a couple boxes in Aaron’s current residence and the staff (without permission) gave them away. “What would you do? Case of trash vs. treasure”. (I’m still VERY upset about this. Just add it to the list of why I want to get away from them ASAP.)

New Agency

Next week I will begin interviewing residential providers. They will need to hire and train staff by Nov. 1. We have met 3 different providers as we visited the 3 potential placements for Aaron. One company impressed us because it was a local company in Mason, but we are open to suggestions. Please email me ASAP. We are well aware that just because a company was good last month, doesn’t make it good this month. Having caring staff will be the second most important variable, after a good roommate.

Well, we have a busy week ahead. Please say a prayer we sell our condo, it is a huge strain on us. We listed it with another agent last week. We have begun to move some of our things into our new condo.

I’m hoping by Christmas we can look at both Aaron and us in our new homes and know we are in a better places, but GEEZ, it’s going to be an action packed couple of months.

Thanks to everyone for helping make this happen for Aaron. Maybe the Bengals could learn from all our teamwork

Any questions please let me know. Have a great week. Mary

About 1:00 PM, the mother of a young man who might be a prospective roommate called on the phone. That went well so we picked up Aaron at his day program and all met for dinner in a local restaurant.

Email to same group at 9PM.

Tom and I always felt one of the most important steps was finding a good roommate for Aaron. We think we have found a good match.

Aaron, Tom and I had dinner with Jim and his mother, and it went very well, so we would like to move forward.

Jim was very friendly. He is the kind of person that hugs everyone and is best friends with everyone in a couple minutes. He has a devoted mom. Aaron kept looking at Jim. I wish he could speak and tell us his thoughts, but he seemed happy. Jim likes to swim and go to King’s Island—both things that Aaron liked to do in the past. Hopefully, they will be able to do many activities in the community.

By Providence, or some divine plan, or dumb luck…Tom and Jim’s mother actually taught at the same school together and used to talk about their kids at lunch. Pretty amazing, eh?

So, if everything works out—drumroll please– Aaron and Jim will be roommates.

HUD

Jim’s mother is going to call Wendy at the HUD office tomorrow and see what we need to do to get Jim on Aaron’s list. So we will have 3 bedrooms and Aaron, Jim and the caregiver will make three. So, hurrah hurrah.

Also, yesterday the non-profit started painting rooms and beginning the process to get the house HUD approved. So we are really moving forward. It is hard to believe—this is going to happen.

Medicaid Waiver

Aaron and Jim both already have Medicaid Waivers at appropriate levels. So we can begin the transfer of Aaron’s waiver to our new county and start interviewing residential providers.

Finding a good staff will make our miracle triangle complete: (House/HUD—roommate—staff).

Furnishings

My sister Janet, visiting from Kansas, had a friend donate our first items for the house. The director of the non-profit allowed us to begin to put them in the garage.
The painters were there to let us in….
Today went so well, I think I’ll go buy some lottery tickets.

Thanks to everyone who is helping us climb our mountain and move forward. It takes a village….

Mary

Keep Climbing: Onward and Upward
All my best,

Mary

Comments:

Hope you’ll share your thoughts and experiences. I’m happy and exhausted and I know we are only about half-way on the move-in journey. Whew! Now on to making a task analysis for tomorrow. Whew! Whew!

Aaron on exercise bike

Aaron

"Who are you?"

Roommate Needed in Mason, Ohio

Aaron is a great guy who likes other people. He is looking for a roommate.

Aaron is 36 years old. He attended Lakota Schools and is currently in the Goodwill/Easter Seals Day Program in Lebanon.

Aaron likes to go for walks, ride the exercise bike and swim at the community center, go out to eat, listen to music, look at books, baseball cards and get involved in other inclusive activities in the community.

He loves to go on vacations with his family and ride the trolley bus in Gatlinburg. He likes his Sunday visits with his family and playing with his niece.

Aaron doesn’t talk with many words, but he finds ways of telling everyone what he wants. He repeats phrases and is noisy which could bother some people.

The ranch house is in Mason, near a local park. It is currently being renovated and if needed, could be wheelchair accessible. The home is owned and maintained by the Housing Resource Group of Resident Home, so this will be a permanent residence. Aaron has lived in a house managed by this non-profit for over 11 years and we feel they do a great job.

Aaron has a level 5 Medicaid Waiver which will help pay for the 24/7 staff. He needs a roommate who is also on a waiver or private pay. We are working with our Warren County Board of Developmental Disabilities.

Anyone who has lived with other people knows the importance of finding a good roommate match. Aaron would like a new friend as well as someone who could be part of his extended family.

He is hoping to move in by October/November.

If you know of someone who might be interested, please call me at 513-336-8271.

This is the 11th post about our attempt to bring our son with the label of autism home to the county where we live. We are making progress, and scratching off items on our task analysis, but it is exhausting and full of ups and downs. If you want to review some of these posts, they are listed in the bottom of the left side column.

Comments:

It is difficult to describe Aaron. He is loving and wonderful, but a prospective roommate also needs to know Aaron is noisy and that might be an issue for some people with sensitivity to sounds. So, how can I give Aaron respect and dignity and yet be honest.

Aaron has had the same roommate for 13 years. He and Jack are good friends and care about each other. Jack’s family isn’t interested in having him move to our county. Leaving him will be one of the hardest parts about moving. We have endured a lot of “issues” in the past few years, just because we didn’t want to split up Aaron and Jack.

We can only hope we will find someone like Jack, and as you know, everyone is unique. We ask your prayers.

Any suggestions greatly appreciated.

Keep Climbing: Onward and Upward

Mary

photo credit: Mini D

The Disability Shuffle: Two steps forward, one step back. OR, One step forward, two steps back…. The frantic drumming of time passing pounds in your ears as you shuffle and twist and beg others to listen and join in your dance of survival. “Can I keep up or will I fall and break my neck?”

As you straddle the wall between Normal and Disability Worlds, you wonder, “I’m dancing as fast as I can, but is it to my own song, or am I merely a puppet dancing on the professional’s strings?”

This is the 10th post about our attempt to bring our son with the label of autism home to the county where we live. Over the course of a year, this is about the 500th action step we have taken to try and make this happen.

Today I have good news and bad news.

GOOD NEWS

One of the local non-profits is willing to purchase a house in the city where we live.

According to the policies of HUD, parents and family members are forbidden to own the houses.

This non-profit has been around for a long time and will likely be solvent. Aaron has lived and rented one of their houses in B County for the last 13 years. They do a good job.

They are willing to get the house HUD approved and Aaron would be able to use his “housing choice voucher” to become the head of household and rent from them. This voucher is also good for any roommate Aaron would pick.

Aaron could live in this house for the rest of his life. The non-profit said they would let us be involved in the process of finding a home. It could be close to where we live, so we could stay active in Aaron’s life and watch over his care and the unpredictable staff. Since we would treat this home like our own, we pledge we would be good stewards.

Finding, Purchasing, Renovating, Furnishing and moving in will take time. And we are already on our second 30 day extension in the HUD timeline. Ouch, only 60 more days.

Since Aaron would use his HUD voucher for himself and another person, this would be a long-term solution which would help costs in the new county.

HUD HOUSING PROBLEM SOLVED. Right?

With creative problem solving and resources in Disability World, we could meet the criteria set up in HUD Regular World. (Another time we can talk about how HUD Regular world, might be another parallel universe from Normal World.)

EXCEPT

The County Board of DD must give their permission for the non-profit to come into the county and be willing to work with them. I don’t think this is any law, just good business practice.

BAD NEWS

Each county sets up their own non-profit to rent the houses to people with disabilities.

Some of these use HUD Section 8 rent vouchers,

Others just have the people pay the full rent, and

Some have their rent subsidized local county funds.

Each County is Different.

The non-profit housing agency in B County is pretty independent of the board.

The non-profit in W County is run from inside the county offices.

Same mission–to provide affordable accessible housing–totally different structures.

B County uses many HUD vouchers; W County uses rent subsidies from local funds.

Aaron and the people with disabilities I am talking about are among the poorest and most vulnerable of Americans. They have labels of physical and intellectual disabilities, autism, developmental disabilities that started before age 22. Many have no family or others to help them at all. Each county tries to keep the rent at 1/3 of the person’s income or social security check–which is around $120.

Everyone knows there aren’t many places to rent for $120. Even with a second roommate that is only $240. If you add the special accessibility needs—well, you get the idea. People with disabilities are going to need some sort of rent subsidy to live in any decent house or apartment.

Our new county’s housing non-profit does not have the funds to buy any property in our city (the largest one in the county). They have most of their property in the county seat, which is centrally located to the county, but not to the population. I wrote about the one property they do have in our city in Part 8| Roommate hunt continues Medicaid Waiver Style
and Part 9| Should I rent a billboard? So, bottom line.

Our new county is “thinking” about accepting the offer but it has to go up the food chain. It is a bureaucracy and even if it is a good bureaucracy, there are staff who go on vacation, go to conferences, have babies, use personal days, and have full agenda’s that don’t include Aaron Ulrich, someone who currently isn’t even in their county. YET?

So we wait. And wait. And pray that we will be able to meet the timeline. We keep dancing on the wall.

And maybe they are hoping if they keep us dancing long enough, we will wear out, and exhausted we will give up and stay where we are. Not bother them in this new county.

But Tom and I live in W County. Have for 12 years and plan on being here for the rest of our lives.

Meanwhile…

photo credit: 2create

HOUSE OF CARDS

Friday we got a notice that the Director of Aaron’s Day program resigned suddenly. We LOVED this director. She put her heart and soul into developing this new day program in our new county.

So, Aaron loses his good friend and a competent professional who loved him.

As it looks like we might be solving one problem and be able to add one card to the residential domain of Aaron’s life (God willing and the creek don’t rise) another card in the vocational domain collapses.

So be it in the life of a family of people with disabilities. And when this HUD Housing Card is in place, then we get to continue the search for a roommate who has a Medicaid Waiver and who would want to live with Aaron.

Hey, wonder when families will get a break and be able to go on vacations, take personal days….?

One step forward, two steps back… The Disability Shuffle continues.

Comments:

Does this make sense? Does your county have a non-profit board for housing? Does your family member have a HUD or other rent subsidy? If so, who owns the house? Today I’m going to concentrate on the hopeful promise of the non-profit and pray it works. What hopeful promise are you praying for?

Keep Climbing: Onward and Upward.
All my best,

Mary

photo credit: numberstumper

Should I rent a billboard| Medicaid Waiver Roommates Part 9

This is Part 9 in a series of posts about moving my son Aaron, who has the label of autism, from his current residence to the county where we live. If you want the background click on Searching for a Roommate: Medicaid Waiver Style| Part 8

Visiting House #3: Picnic and Social Gathering

First Meeting

In Part 8, my husband, Tom, and I met with two representatives of the residential company’s administration and our County Support Coordinator. We did a quick tour and saw enough good things to want to set a follow-up meeting where Aaron would get to meet the two potential roommates, Andy and Bea.

Yes sir, Andy is the Andy who had the problems in House #2. Disability World is a small place.

Flurry of Emails

The staff decided a picnic at the house might be a fun way for everyone to meet. Aaron likes picnics, and the informal atmosphere sounded good, so we set the date for 6 PM on a Wednesday evening.

Both sets of parents emailed me and welcomed us the next day. The staff said they would grill hotdogs and hamburgers. I offered to bring the dessert. The other parents brought salad, and macaroni and cheese. Bea’s and Andy’s parents, plus each of them had a sister who was coming.

In our previous experiences, the family members did not use email and it was difficult to communicate. I was excited this was so easy.

The professionals were not going to be able to come but we were looking forward to meeting the two young people and talking with their families.

I didn’t know how many people and they said they didn’t have any food allergies, so we brought two gallons of ice cream (one chocolate with nuts, another Neapolitan) some fancy butter cookies, plastic bowls and plasticware. These were Aaron’s favorite, and since we wanted to impress them, came from the best bakery/ice cream parlor in town. (Really, you didn’t think I was going to bake them myself????)

I also wanted lots of extras because most people with disabilities don’t have many extras after their food stamps run out.

I called Aaron’s house and ask them to clean him up after his day at the day program and the staff had Aaron shaved, in clean clothes and spit shined. He looked terrific.

Aaron was a little surprised we were picking him up on a Wednesday night, and I told the staff person we were going to a picnic with some new friends. (True, but not the whole story.)

The staff at his current home knew we have been very unhappy, but we didn’t want to tip our hand about Aaron potentially moving because:

1. We were still in the exploring stage.

2. Nothing was definite.

3. We knew they would blow everything out of proportion.

First Date

Andy and Bea met us at the door when we knocked. I was thrilled. This seemed so “normal” and respectful. I thought, finally, the staff must “get” the idea that this is Andy and Bea’s home and they would be the ones to greet visitors. It gave me the warm fuzzy feeling of welcome.

We were invited into the family room and the place had lots of energy, noise and … lots of people. I think it scared Aaron.

We met Andy and Bea’s parents and sisters and were about to sit down, when one of the staff people ushered us out to the back yard.

It was a beautiful day, but was hot. The big yard was pie-shaped and fenced. We gravitated to one of the patios in the shade. I thought this was great because it would give Aaron some breathing room and his loud “You okay?” would not be as annoying outside.

Company Picnic and Social

Apparently, the residential company decided to make this a group picnic and social get-together for several of the people they served.

So, besides Andy and Bea, there were probably 6 other people with disabilities and their staff who were playing cornhole, badminton and other outside games in the grass. So, over 25 people.

They explained the residential houses often did leisure activities together in the evening and on weekends. They said the staff shifted between the houses and everyone knew everyone. This made staff changes and emergencies easier to handle and gave more opportunities for friendships and leisure activities for the people with disabilities.

I was okay with this, but questioned whether this was the best way to introduce Aaron to Andy and Bea when we had so much to talk about. I thought the staff should have asked if we thought all these people would upset Aaron.

One staff person was smoking at a table on the patio. This surprised me. Ohio does not allow staff to smoke in the houses, so technically this was not against the law, but it was so casual, I got the feeling it was common practice.

Everyone was very friendly, but it was too much for Aaron. He began to get very agitated and bite his hands.

Tom and I gave him his baseball cards to comfort himself, but there were not any chairs outside. We stood on the patio and watched as one of the head residential staff started up the grill.

The grill was in terrible shape. It was a gas grill that no longer worked, so they put charcoal where the grill element used to be. They also didn’t seem to have the long spatula and were using regular pot holders. I decided a new grill might be a good housewarming gift if Aaron decided to move in.

The staff person who was supposed to bring the meat was late, and then forgot the meat, so by the time the meat was finished it was after 7PM, the games had become tedious and all the people with disabilities were HUNGRY.

Someone found a plastic chair for Aaron, but he was not a happy person. He kept saying, “You okay, you okay” in his usual manner, but it made the other people uncomfortable and ask about him.

Mental Note: Add some outside chairs to the list of things to buy for the house.

They asked if Aaron wanted to play the games, but he just bit harder and this scared some people.

Tom and I alternated taking Aaron for walks around the house. This helped him calm down, but Aaron really wanted to eat.

We noticed a dead tree in the front yard, lots of weeds, and there were two cars parked on the front lawn. Now granted there was lots of company and most people parked on the driveway or street, but we have had trouble with staff before who thought it was okay to park on the grass.

Parent Talk

For this first hour, Andy and Bea were nowhere to be seen. We did have some lovely conversation with Andy and Bea’s parents. Typical parent talk: Where did our children go to school? How long have they lived away from home? What did they like to do? How often did the parents take their child home? What Doctors? Where did they go to day program?

When the food was finally ready, one of the staff persons asked Aaron if he wanted to eat in the dining room with Andy and Bea and some of the other young people.

I thought this was nice and gave Tom and I a chance to be with the other families in the family room. The staff gave us lots of privacy (if you can ignore 25 people walking in and out of the kitchen and family room).

No one used the living room (there was too much furniture—no one could move around). Did anyone else notice this? At some future time would I need to talk to Bea’s mom about getting a smaller coffee table?

Over our baked beans, mac and cheese and hamburgers, the other parents loosened up. Now, we were starting to get the real story about their children, the house, the landlord, the county….

Some of it was good. They liked Susan, the Support Coordinator; they thought the Residential company did a good job. Their families and Andy and Bea seemed to get along well. All positives.

And yes, here is where we got the story about the van wreck. We suspected Andy was the person from the previous house, but his mom told us the whole story and it sounded like the staff supervision was a big part of the problem.

Bea’s mom has some health issues and was worried that her daughter get comfortable in her own place in case something happened to her.

Both families shared their thoughts and worries.

We started on our list:

Aaron is loud, would Andy get aggressive or upset when he was trying to watch his big screen TV?

Would he be protective of “His” room and furniture?

Would they allow Aaron to bring in his things and carve out a living area? Or, would Aaron be like an invader?

Could Aaron bring his own couch? What would they say the first time Aaron spilled stuff, or had a toileting accident on their new sofa?

These were all concerns that would need further discussion. All of us were honest and thoughtful; we were all trying to figure out what was the best for our children. I wish Aaron, Bea and Andy could use words and tell us more what they were thinking.

Would the residential provider promise us good stuff and then only see Aaron as a “cash cow” like the previous company?

Landlord Issues

The biggest concerns were about the landlord.

Both parents had stories where the landlord wouldn’t return phone calls or emails. The landlord wouldn’t even cash the rent checks for months messing up the checking accounts. RED FLAG!

When we asked about remodeling the bathrooms, they thought it was a great idea, but thought the landlord may/may not be interested, even if it was at no cost to them. RED FLAG!

Bea’s mother bought a sturdy stainless steel bar for the shower, but the landlord still hadn’t given permission to hang it. (It was on the top of the refridge in the kitchen.) Meanwhile Bea struggled taking a shower. RED FLAG!

I asked if they thought the landlord would take a HUD housing choice voucher and they said they couldn’t even guess. RED RED FLAG!

I asked about the dead tree in the front yard and waist high weeds. They said the landlord contracted the grass cutting to the county agency, but didn’t do anything else to the yard. RED FLAG!

The parents said if they could, they would move their children to another house because the landlord was so unpredictable. SCARLET FLAG!

Second Date?

I sent emails thanking everyone.

Susan was still on vacation. The head of the residential company was still in the hospital with her new baby.

It was a long shot that it would be a match. There were just too many variables.

The hard part was the week wait; no one would even talk with us.

If everyone decided to move forward, the next step would be for Aaron to go and spend an hour or so with Andy and Bea without us.

And, of course, all week Aaron’s current residential provider went crazy asking us questions. We told them we were looking, the same as we told them before. We told them we had no idea how long this would take. But it was awkward and emotional.

After everyone got back from vacation, having babies… Susan talked with us and said the families were concerned it was just too much change for their children.

Nothing against Aaron, but they didn’t think a third roommate was a good idea at this time.

Aaron would not be a good match.

Tom and I had pretty much come to the same conclusion. But, it is still hard to be rejected.

So back to the county…start again…and face the ticking clock.

COMMENTS

Any thoughts? I love for you to share your stories in the comments and social media.

Is the dating or matchmaker analogy appropriate? Should I rent a billboard?

Keep Climbing: Onward and Upward.

Mary

photo credit: monkeyc.net

Roommate Hunt Continues: Medicaid Waiver style| Part 8

This is Part 8 in a series of posts about moving my son Aaron, who has the label of autism, from one county to the adjoining county where we live. If you want the background click on Searching for a Roommate: Medicaid Waiver Style| Part 7

HUD UPDATE:

The clock is still ticking: we are asking for an extention until Sept. 31.

Ulrich HUD System Change Recommendation: All counties and states should use the same forms and the same rules/regulations. There is a time and place for state’s rights; it shouldn’t be on a federal program like HUD.

It would be so much easier on everyone if all the regulations and timelines were the same everywhere, not different in each county, each state. Then when a person looked for information on HUD.gov – they would find the information, not—each county has to explain “their” rules and regulations. Much confusion and time and wasted, and it is unnecessary. i.e. one county says you have to apply by the first of the month, another anytime….
I remember when PL 94-142 (Education for Handicapped Children Act) was passed in 1975. (Hey, I’m old.) Each school district in each state developed their own IEP forms. The idea was to give local control and not “impose” Federal regulations. Phooey. Parents and advocates then spent the next 10 years making sure the districts forms complied with Federal Law. It would have been sooooo much easier to have one Federal form, like they do now. Why take 35 years to figure that out?

Potential Roommates: House Number 3

In Part 6, I told about our meeting with Barney and his family. We also learned about a former roommate named Andy. Here is our meeting with the potential Roommates in House number 3.

Support Coordinator

Each residence in the county has its own Support Coordinator (like a social worker). So, this is our third house visit and our third Support Coordinator. If this residential placement doesn’t work and we check out another house, we will be assigned another Support Coordinator.

Ulrich System Change Recommendation: When a person is moving into a county they should be assigned ONE Support Coordinator, even if it is just for the transition into the county.

In our old county, we have had the same Support Coordinator for over 15 years, or forever in Disability World terms. She knows Aaron, she knows us. We love her and I think she loves us. She has followed our journey and helped us in innumerable ways, including talking to me when I need to vent and problem solve. We trust her judgment implicitly. When we actually move to the new county, one of the biggest losses we will feel is losing this dear friend and ally.

In the new county, Susan, our Support Coordinator du jour, reminded me of our beloved Support Coordinator from the old county. Susan called us and asked about Aaron, she even went to visit Aaron in his new day program at Goodwill/Easter Seals. She spent about an hour with Aaron and his Day Program Supervisor. (This got her great first hand information and brownie points from us.) This bought trust and loyalty from us.

Ulrich System Change Recommendation: Before the Support Coordinator or County Administrator tries to match potential roommates, they need to meet the person and family.

I know this is the day of on-line dating and matchmaking, but even if the Support Coordinators have Aaron’s ISP (Individual Service Plan—the adult version of the IEP), paperwork will never substitute for meeting the actual person.

In the comments from Part 7, two people recommended each county setting up a sort of online match site. It makes an interesting idea.

Visit House #3: Perfect Ranch near Park

Tom and I were pleased and excited when we learned the house we were visiting was literally within walking distance of our home. It was a large 60’s ranch with 4 Bedrooms, 2 Bath, sunken Living Room and even a family room. It was brick, had a fenced yard and was on a cul-de-sac with sidewalks. A city park was only a block away. Perfect, eh?

The house belonged to the parent of a young person in the County DD program. The county was desperate to find a ranch in our part of town and these parents said they could rent the house until their child grew up and could live there. Perfect, eh?

Susan said both the potential roommates were about Aaron’s age. I’m not really into labels, so I didn’t ask, and she didn’t offer. She said the county was only going to put 3 people max. in the house, even though there were 4 bedrooms. She said it was unusual to have a male and female as housemates, but it was working well in this situation. The one person mostly stayed in the living room, the other mostly the family room. They had only been living together for about 6 months. Perfect, eh?
She said the parents were active in their children’s lives. The one mom painted the common rooms (kitchen, living, dining and family rooms) and furnished the family room with new couches, flat screen TV….. The other parent bought the washer/dryer and furnished the living and dining rooms with new furniture. They took their children home for holidays and special occasions and visited them each week. Perfect, eh?

Susan highly recommended the residential company (who also came with the house). Perfect, eh?

She thought Aaron’s loud non-stop talking would not be a problem because the house was big enough, he could find his own favorite place to hang out. She said the two people liked to be out-and-about in the community and there would always be two staff people during all awake hours, so if one person wanted to stay home, it was possible, but Aaron would be able to be active. Perfect, eh?

Stakeholders Meetings

Susan thought it would be a good idea to meet with representatives of the residential company and let us tour the house before we actually met the potential roommates and their families. This way, if it didn’t work out, the potential roommates wouldn’t get confused or excited for nothing.

I thought that was a great idea–the less confusion the better. If the house was not going to work, then there was no point in getting Aaron and the other two people upset.
Susan, and two administrators of the residential company met with Tom and I one afternoon. We toured the house. We did a quick ecological assessment.

Ecological Inventory

Love, love, love the neighborhood and the fact that it is so close to our house. Lot of good things: nice floor plan, solid construction, good lighting and windows, two patios in the fenced back yard. There was new carpet and the kitchen had some new appliances.

But, the sunken living room did not have any railing or protection around the one foot drop. They had an 8×11 piece of paper taped to the floor that said, “Watch your step” but that wasn’t going to work with Aaron. He would need a protective railing across the 7 foot entrance to the living room and dining room, plus a railing to get down into the living room and up into the dining room. (Hope that made sense—the living room was one foot down from the hallway and the dining room.) If this house was to be used for the long term housing of people with disabilities, it would be a good idea to level the floor. There was no basement, so insulation over the slab would make the room more comfortable if the floor was leveled out.

The new furniture the parents bought took up the entire living room floor space. The coffee table was so large, you had to walk sideways around it to get to the other side of the room or to even sit on the couch. Aaron cannot walk sideways.

The new furniture in the family room was more accessible and Aaron wouldn’t have to climb up and down steps and risk toppling over the edge, so we thought Aaron might spend his time in the family room, but that meant he would not have access to the largest room in the house.

The bathrooms were an issue. The master bath was off the master bedroom. So, Aaron would have to go through the young man’s room to take a shower. The shower was probably 50 years old and wasn’t just old, it didn’t look clean. There was clutter on the floor. I worried that Aaron would not be able to just walk into the bathroom and god knows, we have enough toileting issues.

The second bathroom was long and skinny and was off the hallway. It was also not clean and had not been remodeled since the house was built. A staff person would have a difficult time helping Aaron take a bath/shower and help him with toileting—there was no room.

The bathroom in the hall was used by the young woman. There was a plastic stick-up bar in the shower which didn’t look sturdy.

We talked about the bathrooms being remodeled. After all, the first rule of advocacy is to ask for changes up front, before you sign the line, when you have more power.
The young woman’s bedroom was painted and decorated in her own bright pink. It had a personality and looked like a happy place

The smallest extra bedroom had an exercise bike in it and a closet with shelves, but no hanging rod.

The other was smaller than his current bedroom, had a bed for the staff and a regular size closet. So if Aaron moved in, he would take the bedroom with the regular closet and move the staff.

Discussion

The visit was cordial. There was some potential for a match, so we decided to set up a visit the next Wednesday evening, when Aaron could join us to meet the young people and their families. The woman in charge of the residential company was expecting a baby (to be born the next day) and her second in command said she would set it up and email me. Susan, was going on vacation but was enthusiastic this would be a good match. We all left hopeful.

TAKE-AWAY

Tom and I both were surprised that they had two staff in the house at all times, and yet the bathrooms were so dirty and the house looked upkept. And…they knew we were coming. We wondered if that meant anything? Would these staff be any better than the ones we had now? Would there be a caring staff person like our favorite staff person, who has loved Aaron and looked out for him for the past 8 years?

We also worried that Aaron was so loud, how would the young man feel about that when he was trying to watch his big screen TV? Would the young man be protective of “His” room and furniture?

Would they allow Aaron to bring in his things and carve out a living area? Or, would Aaron be like an invader?
What would Aaron think about living with a young woman? Since most of his current staff were women, would he see a difference?

It would be nice to have parents that were willing to help with the maintenance, painting, buying furniture…. We are all looking for long-term placements for our children in safe neighborhoods. But, what would they say the first time Aaron spilled stuff, or had a toileting accident on the new sofa?

Susan, said she would ask the landlord about accepting the Section 8 housing choice voucher, but we worried about that too?

So, stay tuned. All kinds of interesting things happened the next Wed. evening.

TEASER: The young man turns out to be Andy. Yea, the person from House #2 who punched a hole in the wall and drove the van into two of the neighbor’s houses.

“Life is either a daring adventure, or nothing at all.” Helen Keller.

COMMENTS

Any thoughts? I love for you to share your stories in the comments and social media. What would you look for when you were trying to find a home for your child? Many parents of typical kids help their children paint and buy a room of furniture, maybe some appliances. Can you see a difference in what a parent must do, if your child has a disability?

Would it make a difference if Aaron was in the home first and he got to choose the second/third person?

Keep Climbing: Onward and Upward.

Mary

photo credit: piermario

Searching for a Roommate: Medicaid Waiver style| Part 7

This is Part 7 in a series of posts about moving my son Aaron, who has the label of autism, from one county to the adjoining county where we live. If you want the background click on Searching for a Roommate: Medicaid Waiver Style| Part 6

HUD UPDATE:

I can’t say enough good things about both the HUD counselors in the sending and the receiving counties. They are terrific and I feel they are rooting for us, and hoping Aaron can find a place to live which will accept his housing choice voucher, an appropriate roommate with matching Medicaid Waivers for quality residential care, and a happy life.

What a blessing.

That said, we filed for the time extension and learned that for an uninterrupted rent subsidy to go through, our letter, the letters from the receiving county, and the landlord had to be filed by the 20th of the month and I would need to go to their office to sign the papers. So, still some work to do, but at least now I know the rules.

Roommate Search

In Part 6, I told about our meetings with the first proposed roommate and his parents. Here is our meeting with Roommate #2.

Roommate #2: Van into houses

We scheduled the visit to Potential Roommate #2’s house on a lovely evening. We parked the car and waved to the neighbors who were watering flowers and taking out the trash cans. They seemed friendly, but were clearly checking us out.

Aaron, Tom and I arrived about 7:pm and met Barney, a young man in his early 20’s, his parents, the head of the agency that provided the residential care, her elderly mother, and a college student who was the staff person on duty. The DD Support Coordinator who was assigned to this house was not able to come, but since the clock is ticking we wanted to move forward and he arranged the visit.

Former Roommate Andy

Everyone was pleasant and they told us they were very anxious to find a roommate because Andy, the previous roommate, did not work out. Apparently, Andy was dual diagnosed with some mental health as well as intellectual disability labels and he took the staff’s car keys, started the van and drove into two houses on the street. (No wonder the neighbors were so intense.)

So, Andy no longer lived there.

Well, okay, after that story we figured Aaron would be a breeze.

Parents believe in Segregation

Barney’s mother said she taught in the local school district and was proud they were going to start “Autism Only” classes next year.

The Dad told us he was very active in Special Olympics.

Barney

We had been told Barney liked sports, so we brought him a Starting Lineup Figure so Aaron and Barney would have a positive first interaction of Aaron giving something to Barney.

Barney likes to fish

One of the first questions we were asked was if Aaron liked to fish. In the back of the house was a fishing lake and Barney spent much of his free time standing on the side of the lake.

Barney didn’t like all the people in his living room and seemed quite anxious. When the staff person opened the back door, Barney shot down to the lake.

Tom, Aaron and I went in the backyard and noticed the yard sloped down toward the lake, there were no fences, and the weeds were very tall. Immediately, we worried that Aaron, who has terrible balance issues and often wanders off, would fall down into the lake. Based on our previous experience with inexperienced, lazy staff, and their story about Andy smashing the van into houses and almost killing himself, we wondered how safe Aaron would be.

Parents Own the House

The house was owned by Barney’s parents.

His mom apologized for the way the house looked so beat up and explained that as soon as the school year was over she planned on painting and doing a deep cleaning in the house. The parents also did all the lawn care which also needed some attention. This made us feel a little better because the rugs were stained, and the whole place just didn’t look clean.

The house was a traditional two-story with a kitchen, ½ bath, and combined dining/living area on the first floor. Three bedrooms and 2 baths up.

There were not really enough chairs for everyone, and the elderly woman was sitting in a broken reclining chair.
The upstairs had a master suite (bed and bath) that Barney used (which was filthy and cluttered). There was another bath and two additional bedrooms which were nice. The closet was full size, not as large as Aaron’s current closet, but at least the clothes would fit on the hanger, you didn’t have to hang the clothes sidewise like the closet in rural house #1.

There was a large hole in the wall at the top of the stairs. We were told Andy, the old roommate, had punched the wall, and again, after school was out, they would be repainting and repairing the wall.

Match?

Aaron was noisy, but as we were sizing up how he and Barney might get along, they were also sizing us up. We got the feeling they were hoping for someone who was higher functioning, and someone who would want to spend long periods of time at the fishing lake with Barney. Neither Barney nor Aaron spoke any words but they would watch each other.

We told them we had concerns about the stairs and the fishing lake. We told them Aaron gets sunburn in about 10 minutes (he has red hair, is very fair, and has a family history of skin cancer).

Aaron’s ISP (Individual Service Plan) requires a staff person to always be within hearing distance of Aaron and he would NEVER be allowed to be outside alone. The head of the residential company assured us she would be able to hire staff, Aaron would never be alone and this was doable.

The parents were actively involved in Barney’s life, but Barney didn’t go home for the weekends like Aaron. He stayed at the house all the time, except Christmas and special occasions.

We also learned that Andy, the old roommate had a HUD housing choice voucher. The father told us he accepted the HUD and got the house HUD approved, but his son couldn’t get the rent discount because of the “parents owning the house rule.” He did say the county paid a “rent subsidy” out of county “bridge” funds.

We had a pleasant conversation and both families were to go home and think about it.

The mother walked us to the car, and as we pulled away, both neighbors came to talk with her. I’m guessing they were as worried about the new roommate (Aaron) as we were worried about them. If someone drove a van into my house, I’d want to check out the new roommate too!

This decision was not as clear cut as our previous visit to house #1. Aaron didn’t give us any feedback, positive or negative, so we debated the pros and cons.

TAKE-AWAY

Ultimately, we called the family and told them we didn’t think this was going to work for Aaron.

We were just not confident about the supervision of the residential company (and there can only be one company for the whole house) and we had concerns about the stairs and the lake.

One visit was really not enough to tell how Barney and Aaron would get along, but we decided to keep looking.

The other take-away is that once again, the family owned the house but didn’t maintain it as well as Tom and I would expect. I’m not sure how the family would accept our help to plant flowers and pull weeds. They were very proud of it, just the way it was, holes in walls, dirty carpet, broken furniture was just the way things were and would get fixed someday.

I didn’t want to have to worry about “normalization” and “social role valorization” and our house being the worst on the street. With their philosophical bent toward segregated “autism only classes” and “special olympics” I just didn’t think it would work.

The information about a person with a disability being able to use his HUD housing choice voucher in another parent’s home was an interesting idea and one we might be able to use later.

So, strike 2. The next post will be about visit #3. Wait until you hear some of the surprises.

COMMENTS

Any thoughts? I love for you to share your stories in the comments and social media.

So, do you think parents owning the house is a good/bad idea? Would it make a difference if Aaron was in the home first and he got to choose the second person? Should we be looking to a non-profit to own the homes? A traditional landlord? Can we trust the residential company when the previous person had enough time to start the van and run it into two houses?

Keep Climbing: Onward and Upward.

Mary

photo credit: diegodiazphotography

HUD Tips for Parents and Guardians of People with Disabilities| Part 3

Disclaimer: I am NOT an expert on HUD. I am sharing my personal experience. Please check with your local HUD.gov office.

In the last two posts, I’ve been documenting our journey toward moving Aaron, our son with the label of autism and developmental disabilities, to a new county with his HUD “housing choice voucher program” and Medicaid Waiver.

Here’s the recent status report:

1. On June 29th, Tom (my husband) and I met with two administrators from the residential provider and toured a prospective house for Aaron, recommended by the County Board of Developmental Disabilities. (This is our third different home to visit; the first two roommates were not good matches.)

The two administrators, residential providers, seemed competent and ask the right questions. The one administrator had a sister with a disability.

We shared Aaron’s ISP (Individualized Service Plan) and talked about Aaron’s needs.

Of course, the critical deciding factor will be Aaron’s compatibility with the other two roommates.

The ranch house was only a mile from where we lived. Aaron’s bedroom and most of the house were structurally sound, but there were some issues with the bathrooms needing to be remodeled, a sunken living room (which would be dangerous for Aaron who has a movement disorder and lots of balance issues) and the biggie, would the private landlord take a HUD voucher?

2. We filed with HUD for a 30 day notice to PORT to another county on June 30th. (Had to be in by the 1st of the month.)

3. We signed the physical paperwork with HUD (and the wonderful counselor) on July 5th.

4. Almost immediately, we got a nasty call from Aaron’s current residential company because they were so “shocked” we were unhappy. (Duh, if they had listened at even one of the meetings, they would have known this, clueless is not even close.)

5. Paperwork arrived in new county on July 5th. I called to set up an appointment only to be told they would send me a letter, and they set the appointments–not the consumer. (Okay, power struggle). Plus, the office was getting new carpet so the woman in charge wouldn’t be able to call me back. (Power power struggle). Lots of sighs at our house.

6. On July 5th, Aaron, Tom and I went to revisit the proposed home. We had a cookout with about 20 people including the two roommates and their families. The head of the residential company went into labor and couldn’t attend. The case worker who is in charge of this house (everyone in the house has the same caseworker) also couldn’t attend because she was on vacation until July 12.

7. We’ve been waiting and waiting… so the clock is ticking…the sand is shifting through the hourglass, the … every other cliché you can think of…we only have two more weeks left in July and the 30 days will be up.

Question:

Wonder if there is any loophole in HUD regulations that says, “The thirty day notice is for thirty days, unless the staff person is on vacation, having a baby, or is getting new carpeting in the office.”

What are the chances Aaron will find great roommates and happiness and quality care?

Another month from now will I be sending you all “HUD Tips… Part 25″?

“Will there be enough cliche pictures for all these parts?”

Can’t wait to tell you what happens next.

Comments

Please share your thoughts. Do you have any tips for housing for people with disabilities? If you rented houses, would you consider accepting the HUD rent subsidy voucher? What other cliches can I use? (Up the creek, cat up the tree… “Like the sands of an hourglass, so are the days of our lives….???????)

Keep Climbing: Onward and Upward,

Mary

Other Related Posts You Might Find Interesting:

HUD Tips for Parents and Guardians of People with Disabilities| Part 1.

HUD Tips for People with Disabilities| Part 2

Forgetting Spells, Inclusion and Happy Endings