Archive for the ‘Disability’ Category

Grandma gets a Thong

The twelfth day of Christmas is actually Jan. 6th–Little Christmas, The Feast of the Magi.

Actually, it’s all the Magi’s fault. They are the ones credited with giving the first gifts.

Based on the number of people in line at the return desks last week, I’d say many people had problems with their gifts. (Actually I could see Mary and Joseph thinking the gold was useful, they could buy a wagon or better donkey, but what were they supposed to do with Frankincense and Myrrh. Myrrh–really????)

I know it is supposed to be the “thought that counts,” but it really is much more. Gifts are a whole cultural phenomenon.

My mother is 89.

Recently she’s had hip replacement surgery and has trouble shopping for herself.

Two months before Christmas she told me she wanted slippers. Slippers it is. I don’t have to guess her gift. And this is great…EXCEPT

Every day for the next month she would call me on the phone (usually at 6 AM because that is when she wakes up and is thinking about slippers) and define what kind of slippers. They had to have rubber soles so she could wear them outside if she wanted. And this is great…EXCEPT

She couldn’t tell me her size. It seems some Large slippers are size 8-9, some Larges are size 9-10. And the manufacture, design, model, production all make a difference.

I went to three different stores and brought her “Pair number one” on Thanksgiving. She didn’t even try them on. Which actually made it easier to exchange them, which is great…EXCEPT

She really wanted black. But none of the stores made black slippers. So, I picked out some navy size 8′s and 9′s and 10′s, and some pink (everything she owns is pink) in a size 8-9, and 9-10. And I figured I’d give her a choice. Which was great…EXCEPT

She decided she wanted slippers that weren’t slip-ons. “Only the devil would make slippers with open backs” and she has had slippers that covered her whole foot, well–her whole life. And, she thinks she has ugly toes, so–none of those slippers with toe cut-outs. So, I boxed up and returned the slippers. And it was great…EXCEPT

The next three stores didn’t have black or whole foot slippers. But they did have navy.

You know where this is going, right?

Yep, I rebought her the same slippers (that she wouldn’t even try on) from the first round. She opened them on Christmas and said they were perfect.

So, it makes you wonder.

Was the gift really about slippers at all?

Grandma and the Thong

The picture above is from a previous Christmas. My sister Martha worked in a lingerie store and gave each of the girl cousins a pair of thongs. They thought they were nice. Certainly something practical they could use. EXCEPT

She also gave one to Grandma.

The gift became an urban legend in our family. It brought down the house.

Even though mom didn’t even recognize the thong as underwear—it was the shared experience with her grandkids that made it the perfect gift.

Which again makes me wonder about gifts.

Aaron’s Christmas Gift and Charity

This Christmas Aaron went to a Christmas Party sponsored by a local non-profit. These are kind folks. Many of the people with severe disabilities are the poorest people in the county and don’t even have family members who can give them gifts. So, this is not only a nice gesture, it is an opportunity for these poor souls to get a little something extra.

This year the non-profit got items donated by local businesses to give as gifts. Over 150 adults with disabilities came to the Christmas Party and Dance.

There are so few recreation opportunities, many of the people put on their best clothes and showed up early. Many more wanted to come, but there was little transportation and they depend on staff–who didn’t want to bother.

At the party, even though they arrived early, there were only chairs for 100 people. So Aaron and Jack, his roommate, had to stand and hold their coats.

Since Aaron has balance problems, and couldn’t understand why he couldn’t sit down (people were guarding their chairs) he started biting his hand and pinching others. Not good behavior at a party.

Their staff person made the sensible decision to leave (even more people were coming in the already over-crowded room). Aaron and Jack were each given a “gift bag” at the exit. Which was nice… EXCEPT

The gift bag had a pair of donated slippers. Yea! I would be laughing too, slippers… EXCEPT

The slippers were size 11.

Aaron wears a size 9.

Now, no one with balance issues is safe wearing a pair of slippers two sizes too big. And, unlike my mother, these slippers were charity—donated. So there was no gift card or receipt, most people had no dutiful daughter, family or staff who cared to make an exchange.

And, Aaron couldn’t understand why anyone would give him slippers he couldn’t use. So he just carried the slippers around the house—making me crazy that good, kind people could be so dumb. After all who is the “intellectually challenged” person here? Did they think they wouldn’t notice the slippers didn’t fit? Or all people wear size 11?

Is “Just getting something to open” the point? Even if they can’t use it?

What is Charity?

If you plan a charitable event and are giving gifts:

Don’t

Don’t just arbitrarily pass out slippers, or coats, or T-shirts with misspelled words.

Don’t give radios with no batteries—because they want to use the radio that minute and staff often won’t be bothered with batteries.

Don’t give them things you couldn’t sell or are broken.

Don’t make your interaction a one-time-event.

Do

Do have a party with chairs and refreshments for everyone.

Do get to know people as individuals

Do think about what YOU would want to get

Do think about normalization, age-appropriate entertainment and gifts.

Do think about transportation and staff and family members

Do consider that the shared experience, like Grandma getting the Thong, may be the best gift ever—no excepts.

Keep Climbing: Onward and Upward

Mary

Comments:

Okay, best/worst gift stories? Am I just being an ungrateful jerk? What is the role of charity? Is it appropriate to give broken, torn things to Goodwill/charity? Only 258 shopping days until Christmas????

Blake Roberts an expert on DECtalk programming

Do You Hear What I Hear?

Do You See What I See?

In 1962, the song Do You Hear What I Hear? became an instant success when its lyrics asked us to hear, see, listen and “Pray for Peace, People Everywhere.” 1962 was a time of fear and uncertainty–much like 2011.

Today, as the year is coming to an end, I invite you to journey virtually to the Middle East–to the land of shepherds and millions of stars Listen and See this new version of a holiday classic.

‘Tis a Season of Magic

Blake Roberts and Pastor Snoopy Botten are musicians and visual artists who have collaborated on many CDs. Both are artists who inspire us to reach for the stars.

Their magic is their vision, talent and… a speech synthesizer with DECtalk software which helps people who can’t sing with words–sing with tech. Those who can’t see–paint with tech.

The result is poetry in motion.

Enjoy!

Do You Hear What I Hear? |Music and Visual Art

http://pastorsnoopi.twigs76.com/songs/DO YOU HEAR WHAT I HEAR.mp3

In Blake’s Words:

Dectalk is a speech synthesizer that can be programmed to sing. I like Dectalk because I enjoy making it sing. Additionally, an almost infinite number of voices can be created with it.

Snoopi is a good friend of mine whom I met on the Internet several years ago. We enjoy working together on the CDs Snoopi has produced over the past couple of years. I did all the DECtalk programming and Snoopi mixed my DECtalk file with the karoake track.

My friend Snoopi is the same Snoopi you know on Facebook.

Snoopi programs Dectalk because it lets people who can’t talk sing like everyone else. I program Dectalk because I enjoy it.

I program songs at the same level of excellence as Snoopi. In fact, I am slightly better in some areas. Snoopi is the best Dectalkist in the world, I am second best. We never intended to be first and second best, we just are.

In summary, programming Dectalk is my favorite thing to do. Blake

More information about Blake and Snoopi:

Click here for http://pastorsnoopi.twigs76.com/”> for an article about this unique team.

If you would like to contact Blake Roberts go to: beroberts@hughes.net

If you would like to contact Snoopi Botten go to: http://www.dectalksings.com/ or email Snoopi at dectalk@aol.com.

The video below is about Snoopi. Imagine, he sang the National Anthem for a professional baseball game. Don’t you love his confidence and spirit? His goal is to get a Grammy–and I think he will.

Keep Climbing and Singing: Onward and Upward
All my best,

Mary

What do you hear? See? Think? Want to discuss?

What did you think of Blake and Snoopi’s version of “Do you hear what I hear?” Do you know anything about DECtalk? or other programs to help people with disabilities talk/sing/dance/make beautiful art? I was struck how their work makes me listen and see differently, how it helps me see “goodness and light.” What about you? Do you know anyone who might also be interested in collaborating with Snoopi or Blake? Does their can-do spirit remind you of Aimee Mullins?

For anyone who buys gifts for a person with autism or a disability, here is a fun twist on the classic poem which shares some of the reasons it is so difficult to find the perfect gift.

Cindy Waeltermann, is the founder of AutismLink and gives us permission to reprint her poem on behalf of her two children who are adults with autism.

Autism Night Before Christmas

by Cindy Waeltermann

Twas the Night Before Christmas
And all through the house
The creatures were stirring
Yes, even the mouse

We tried melatonin
And gave a hot bath
But the holiday jitters
They always distract

The children were finally
All nestled in bed
When nightmares of terror
Ran through my OWN head

Did I get the right gift
The right color
And style
Would there be a tantrum
Or even, maybe, a smile?

Our relatives come
But they don’t understand
The pleasure he gets
Just from flapping his hands.

“He needs discipline,” they say
“Just a well-needed smack,
You must learn to parent…”
And on goes the attack

We smile and nod
Because we know deep inside
The argument is moot
Let them all take a side

We know what it’s like
To live with the spectrum
The struggles and triumphs
Achievements, regressions…

But what they don’t know
And what they don’t see
Is the joy that we feel
Over simplicity

He said “hello”
He ate something green!
He told his first lie!
He did not cause a scene!

He peed on the potty
Who cares if he’s ten,
He stopped saying the same thing
Again and again!

Others don’t realize
Just how we can cope
How we bravely hang on
At the end of our rope

But what they don’t see
Is the joy we can’t hide
When our children with autism
Make the tiniest stride

We may look at others
Without the problems we face
With jealousy, hatred
Or even distaste,

But what they don’t know
Nor sometimes do we
Is that children with autism
Bring simplicity.

We don’t get excited
Over expensive things
We jump for joy
With the progress work brings

Children with autism
Try hard every day
That they make us proud
More than words can say.

They work even harder
Than you or I
To achieve something small
To reach a star in the sky

So to those who don’t get it
Or can’t get a clue
Take a walk in my shoes
And I’ll assure you

That even 10 minutes
Into the walk
You’ll look at me
With respect, even shock.

You will realize
What it is I go through
And the next time you judge
I can assure you

That you won’t say a thing
You’ll be quiet and learn,
Like the years that I did
When the tables were turned…….

Thanks to Trish Doerrler, a parent of a child with autism, for sharing this poem on her blog In so many words.

Hope you all have a fantastic Holiday, with lots of precious moments.

Aaron’s Favorite Gifts

This year we are getting Aaron a tape/CD player because Aaron thinks listening to music is an active sport. He loves putting the tapes (yes, tapes) in and out. We can find tapes in used book stores. They are usually pretty cheap, but that is great because then when they only last a couple days, they can be replaced. The hardest part will be to get the staff to understand the batteries are rechargable and should not be thrown out.

Aaron also likes to lick and flip baseball cards. He especially likes the ones with cheerleaders:)

I wish we had a longer list. He really isn’t impressed with new shirts and underwear.

Keep Climbing: Onward and Upward.

Mary

Comments:

Which gifts work for your child? especially adults with autism or other disabilities? Are the gifts age-appropriate?

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: 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: Creativity+ Timothy K Hamilton

Searching for a Roommate: Medicaid Waiver style| Part 6

This is Part 6 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.

Part 5 contains links to the previous posts: Cash Cows and HUD Interviews| Part 5

Note: The HUD Section 8 rent voucher pays for the rent. The Medicaid Waiver pays for the direct care staff who take care of Aaron.

Ball One in the Air: HUD

HUD Timeline:

May-July County Board of DD set up three home visits with potential housemates for Aaron.

June 30 We, Aaron’s Guardians, requested to move his HUD rent voucher to W. County.

July 6 Signed HUD paperwork in the sending county.

July 15 Met with HUD counselor in the receiving county and completed paperwork.

July 16 Asked for our first 30 day extension from sending county.

Aug. 8 Asked for our second 30 day extension and now have until the end of Sept.

Oct. 31 120 days is up. Aaron loses waiver if he hasn’t signed one year lease.

Typical World:

After the third step, the person has a list of landlords who will accept the Section 8 rent subsidy and it makes sense that they find a place within the 120 day timeline.

Disability World:

After the third step, the person has to begin another complicated process with the County Board of Development Disabilities, to find accessible housing for people with disabilities, match a housemate.

Ball Two in the Air: Medicaid Waiver level of Funding

The housemate must not only be able to get along with Aaron and vice versa, but there will need to be a level of service need for the 24/7 care the two people will require. Because this is funded through the Medicaid Waiver, the housemate must also have a Medicaid Waiver. (There are currently thousands of people in Ohio on the waiting list for Medicaid Waivers—so this is the tricky part.)

This is where the 120 day timeline become freakin’ scary. It is not a coincidence to me that the deadline is on October 31—Halloween.

Ball Three in the Air: Housemate

Aaron has had the same housemate for over thirteen years. They have gotten along great. This was one of the reasons that, when everything else was going wrong, we stayed in the current residential setting. Aaron and Jack are pals. This will be the hardest part of leaving the old house.

Finding a good match will also be the most important and most difficult part of moving to a new house.

As I tell our story of the three houses and housemates we have visited, just remember: I COULDN’T MAKE THIS UP.

House One: rural, rural

We met with the parents of the potential roommate/housemate at Bob Evans restaurant. The meeting went well so we decided to get the two young men together the next day. Their son also has autism and just graduated from school.

The parents renovated the house and it was nice, but extremely small. The location was on the other end of the county.

I’m not sure it would even meet the minimum requirements for a HUD rental because the bathroom was so small and inaccessible. I’m talking sitting on the toilet and touching the tub with your knees. There is no way the staff person could give Aaron a shower–there is no room.

Our hearts went out to this family who were trying to do the best they could. Their son was a lovely person, but was not a good match for Aaron. Aaron sank on the couch and was biting his hands and was overwhelmed during the visit. Later when I begged Aaron to use facilitated communication and tell us anything, the only thing he typed was “bad.”

A representative of a small family run residential service company was also there. She seemed nice, but she couldn’t give me much information about her company other than the owner just had some family issues.

We learned the young man did not have enough funding with his Medicaid Waiver for full-time residential help, so the family brought him back to their house three days a week. This was why they were desperately seeking a roommate with a Medicaid Waiver because then the split costs would allow the two men to live in the home 24/7.

The residential services company and the county case worker come with the house–(one per house). So, when we asked about the case worker we were told the parents really liked him because he shared with them that one of the potential housemates was a convicted felon, and they were so grateful he told them (when he didn’t/shouldn’t have) and they could make sure their son was safe. (RED FLAG).

TAKE AWAY:

Parents are trying to problem solve the best they can to provide for their family.

They wanted to be actively involved in their son’s life.

This family could afford to purchase a small house, near their home.

They could afford to renovate, furnish it and make sure it was maintained with lawn care….

They couldn’t afford the residential care 24/7.

Potential housemates could be convicted felons. Case workers may/may not have to tell you.

Parents could take their child home a couple days a week if the Medicaid Waiver funding was inadequate.

When I asked the parents what their son thought of the 4
day/3 day arrangement they responded: “Well, our son gets confused, he is really excited to be in his own place and would rather stay there.”

When I asked the parents what they thought of the arrangement, they said:
“We have taken care of him for over 20 years with no help. His mother couldn’t work and took him to all his therapies, gave him his bath and entertained him. We never had any help, so 4 days a week is the best it’s ever been.”

These parents were fellow pioneers. Tom and I would have loved if it would have worked out for Aaron and their son to be roommates, but our priority is Aaron—not, would we enjoy being with these parents.

Next post, I’ll talk about the second home we visited.

The bottom line is: WHO WOULD AARON WANT FOR A HOUSEMATE?

COMMENTS

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

Have you ever had to blend the requirements of two/three/four agencies?

Is this useful information? OR, is this like watching your parents show slides of their summer vacation in Death Valley?—boring.

Keep Climbing: Onward and Upward.

Mary

Related Posts:

Home More than a Place

Balancing my Son’s Needs and Mine

photo credit: bixentro

Part 5 | When did Aaron become a Cash Cow?

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 four 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:

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

HUD Tips for People with Disabilities| Part 2

HUD Tips for People with Disabilities| Part 3

Part 4| HUD Tips for Parents of People with Disabilities

“Back on the Ferris Wheel” Analogy…

In Part 4, Aaron and I were stuck on top of the ferris wheel, rocking back and forth as a lightening storm is approaching—tired, scared and trying to keep from hurling our lunches–while far below, the “professional” ride engineer fumbles with buttons, trying to remember if he was supposed to push the forward or backward button….

OR

Ahem. I wish this were fiction, no one will believe the truth and ensuing drama.

When we left off, Aaron and I were waiting for an appointment with the HUD officer in the “receiving county” to accept/deny our “30 Day Notice of Port”:

1. I don’t know these people. And, I really am trying to follow the rules.

2. The 30 days deadline is approaching quickly.

3. The officer from the “receiving county” doesn’t make appointments over the phone. Their policy is to send an official letter with a date and time–and you need to be there. (This is one of the shocks when you aren’t considered to be middle class any more.)

4. By Day 10 of not hearing from them, I am getting nervous the 30 days will run out before we even get an appointment. Everyone seems to be taking vacation time, and then there is the carpet….

5. No one is returning my phone calls. Again, I’m thinking it is vacation and the damn carpet….

Evil Carnival Clowns

A supervisor for the Residential Company we are leaving keeps harassing me that we are not including him in our meetings. “What meetings?” I keep asking him.
Here is where it gets interesting:

Remember back to Thanksgiving Weekend, when the mailman declared Aaron’s house as “vacant” and refused to deliver the mail. See post: Caregivers| This isn’t my job

All mail is sent to main office
Well, since there was a systemic problem with staff not picking up the mail and forwarding bills…the administration of the residential company made a policy to have all mail sent to their main office.

So, the bills do get paid with this new policy.

But all other mail may, or may not, get back to the house ie. Aaron’s birthday card from his grandmother came to the house 2 weeks late.

So, the same residential staff, who couldn’t bother to reach 6 inches outside the door and open the mailbox, is supposed to drive to the main office (10 miles each way—non reimbursed) and pick up the mail.

So the letter from HUD sat in the main office for two weeks. (Voila—date, time, 30 days timeline….)

And, since the mail is going to the main office, any letter which looks important is then screened by the administration. (VOILA—oh my, they are having a meeting and we aren’t invited. Oh my, it looks like we are going to lose Aaron’s waiver money, and maybe he will take the whole house to another company….

Oh my, we will lose the cash cow….

So, the 30 day deadline is ticking away. I am calling the HUD office hysterical I can’t even get an appointment, and the letter with the date and time is sitting in a mailbox in the main office of the residential company I think is totally incompetent and the reason we are leaving the county to begin with.

Plus, since the residential company is trying to sabotage this because they are losing Aaron’s cash cow, they certainly don’t care if the parents miss the deadline, because as all service providers know, “parents are irresponsible.”

So, by the time I get the letter, the appointment is the next day, the same day as the speech evaluation we have waited for, for six months.

Actual Visit with HUD representative

Good news

Once I actually talked to the “receiving county” representative, she was wonderful and we became human beings again.

We scheduled the appointment for the following day. I was on time, she was on time and for the next 2 hours, she reviewed all the forms, policies, restrictions against parents owning the HUD property, and I walked out of her office with Aaron’s packet of forms to be presented to the landlord. She even gave us a list of potential landlords.

We left the meeting with a hug and best wishes. I felt this was a woman I could work with and was excited that we had jumped through this hoop successfully.

Back to Disability World

Now, if Aaron was just poor and had his Section 8 rent voucher for our new county, we would just go shopping for the best apartment/house that would accept the voucher. Because of the low rent, it would be difficult, but doable.

But Aaron isn’t just poor. He also has a severe disability. So, now we begin the journey of looking for not only a landlord (not parents) who will accept the Section 8 voucher, now we must find a roommate who also is looking for a place to live and who has a Medicaid Waiver to compliment Aaron’s waiver.

Medicaid Waiver

I cannot emphasize enough how lucky we are to have the HUD portable voucher. I also have to shout to the heavens a huge thank you that we have a Medicaid Waiver voucher. Without either one of these programs, we would not even have a chance of having a life for Aaron–or traveling this journey toward Aaron living close to us, with a good roommate and the 24/7 care he needs.

From: Mary E. Ulrich [mailto:marye.ulrich1@gmail.com]
Sent: Thursday, July 21, 2011 8:39 PM
To: Administrator of New County
Subject: Aaron Ulrich

Dear Mr. ____,

HUD

Today I asked for the 30 day extension on the HUD rent subsidy, so we have until August 31.

I met with HUD staff in both W and B County.

Our 2 hour meeting in W County involved filling out all the paperwork, and we are now ready to go in W County.

I learned that if Aaron uses the rent subsidy he must stay in that place for a year before he can move. If Aaron is not placed by 120 days he will lose the voucher completely and go back to the bottom of the 3-5 year waiting list.

If I understood it correctly, Aaron could move into our home during the 120 day period. He would not be using his HUD voucher during this time; W County HUD would be holding it for him. We could use this time to establish his W county residence so we could get a support coordinator, etc. I’m not sure how this would affect his Medicaid waiver, but at least he would be out of the clutches of the current residential company and we could get a support coordinator.

According to HUD, In-home support staff can be family members, or not. They would get an extra bedroom in the home if they live there full time. (Not shift workers).

We were given a list of apartments and rental homes in W County that take Section 8 clients. Another housing option is just to check out houses for rent and then ask the landlord to take section 8.

There is an exemption for parents to own the house, but in the 13 years Wendy (the HUD representative) has worked in W County only one was ever approved. So it is a hard sell. (But we could try if we need to.) That person was deaf and blind and the argument was that it would be too hard for him to learn the physical layout of any house other than the one he had grown up in.

Other CompaniesTransportation Money

Aaron is over his transportation budget to go from his current home in to Goodwill/Easter Seals Day Program. At his current rate, he will be out of transportation money by Sept.

The long bus ride (around 90 minutes each way) is still causing him to have increased behaviors (chewing his shirts, biting hands, toileting accident…)

Residential Company

Aaron’s current company is very difficult to work with and putting pressure on us. The supervisor said to move the Medicaid Waiver Support services from one county to the next is also a complex process. (And I’m not sure how cooperative they will be, so we might need extra time.)

Roommates

We would appreciate any phone numbers of potential roommates as soon as possible.

Thanks for all your help. I’m sure there is another person looking for someone like Aaron.

Mary

I am posting the administrator’s response. I like this person. I think he is competent, showed a lot of empathy and truly wants to help. I just want others to see what the process looks like from a parent’s point of view. I also think the 120 day maximum extension period should have some flexibility for special situations.

From: _____________name of administrator
To: Mary E. Ulrich
Sent: Wed, Jul 27, 2011 9:07 pm (notice the poor guy wrote this at night after office hours, before he left for vacation—that gives him bonus points IMHO).
Subject: RE: Aaron Ulrich
Mary,

I am still actively seeking possible housemates that may be a good fit for Aaron. I have requested ___(service coordinator) assist with connecting Aaron and a gentleman living in (county seat). She will be speaking with this person’s SSA to determine if he believes they may be a good match. I am hesitant to involve the other family at this time unless the match may work. I am hopeful it will and then we will assist with connecting you and his mother.

Unfortunately, I am not able to approve Aaron living alone in his own home with 24/7 staffing. The quickest option for Aaron moving to W County is to reside with you. He can receive homemaker/personal care services in your home with a provider of your choosing. If you choose to move Aaron into your home, I will continue my efforts in finding a suitable residential home for Aaron.

I must add that I cannot guarantee a suitable home will be available for Aaron within 120 days of moving.

I understand that this matter is very frustrating to Tom and yourself but I believe finding a good housemate for Aaron is the first priority. While the HUD matter is a concern, I may not be able to solve this dilemma within HUD timelines.

To complicate matters more, I will be on vacation beginning 7/28 and will return 8/8. I have requested ___(a service coordinator) give you a call once she communicates with the potential housemate’s SSA. I am still hoping we can resolve this quickly. Thanks.

__________ name
Service and Support Administration Director
W County
O:
F:
Emergency #: 1-800-

Confidentiality Notice: This e-mail message, including any attachments, is for the sole use of the intended recipient(s) and may contain confidential and privileged information. Any unauthorized review, use disclosure or distribution is prohibited. If you are not the intended recipient, please contact the sender by reply e-mail and destroy all copies of the original message.

COMMENTS

WILL THE FERRIS WHEEL LAND SAFELY?
WILL MARY AND AARON SMOOTHLY MOVE ON TO THE NEXT RIDE?
WILL ANOTHER FAMILY TAKE THEIR SEATS ON THE FERRIS WHEEL?
WILL THE “RIDE ENGINEER” LEARN THE DIFFERENCE BETWEEN THE FORWARD AND BACKWARD BUTTONS?
WHAT WOULD YOU DO?

Keep Climbing: Onward and Upward.

Mary

OTHER RELATED POSTS:

Signing Your Life Away (Literally)

Dream Plan for Aaron (Part 4)

Please recommend ClimbingEveryMountain.com to any other family or professional caregivers. It’s a great way to show how much you care.
If you are receiving this issue of climbingeverymountain.com as a forward, and would like to get your own subscription, sign up for “notice of new posts” on the home page (top left).

photo credit: kevindooley

HUD Tips for Parents and Guardians of People with Disabilities| Part 4: Are we having fun yet?

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 three 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.

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

HUD Tips for People with Disabilities| Part 2

HUD Tips for People with Disabilities| Part 3

Disability Ferris Wheel

Round and Round and Round we go. Where we’ll stop nobody knows….

WHY AM I SHARING THIS?

Social Workers and other professional solve problems all the time.

BUT PARENTS DO TOO!

We just don’t have the experience, contacts, resources and the emotional distance. So, even if we do have the intelligence and problem solving skills, it takes us longer to figure out the system and put it all together. If we are really considered part of the “team” our communication, resourcefulness and advice/concerns are respected and valued.

Our child’s need is often the first time we are trying to solve this particular issue. I often tell professionals, I had to become and expert on early childhood when my son was a baby and young child. Then there was school-age, and now that we are in the world of adults, I need to become an expert on all the adult life spaces where Aaron lives, works, recreates, and interacts. And this is why I’m learning about HUD, residential agencies, non-profit housing boards, county boards, Medicaid, Medicare funding for communication devices, apps on IPADS…. the list is endless.

I hope that makes sense, because the letter (below) shows some of the frustration, some of the complexity, and some of the layers of needs for just our one son. And, all of this happened in just one week.

And since our lives–and our child’s life–hangs in the balance, we don’t have months to resolve the issues.

They always say the best way to teach or to write is to “show, don’t tell.”

I want to “show” what a parent’s life might look like.

A social worker might be taking care of just the residential piece of a person’s life. A teacher, just the school piece. Those are complex, I’m not knocking their jobs.

A nurse or doctor works on the medical piece. A communication or speech therapist, or a dentist, or a transportation person, or even a residential staff or supervisor only handles one tiny piece of the daily life puzzle.

BUT PARENTS OR SELF-ADVOCATES HAVE TO DO IT ALL.

Often, I feel like we are all on a giant ferris wheel hoping to someday get off. But the wheel just keeps on turning…and all of our life is going past in a blur of meetings and appointments and we are getting nowhere. What do you think? Do you feel like you are stuck in the little car on the top of the ferris wheel and the guy below is purposely letting you swing back and forth with your legs dangling in the air. (Ugh, feeling the queezy feeling.)

Here’s my letter, from last week, to our day care staff person and our social worker. Note: I love these two people, so they are worth communicating with.

Letter to Aaron’s Adult Day Program Coordinator and his Support Coordinator.

Hi P___ and L___,

Tom (Aaron’s dad) spoke to the direct care staff person last night:

1. She hadn’t bothered to open Aaron’s backpack or daily communication notebook from the day program.

2. Tom told her to find the electric razor in the bag and see if she could figure out how to use it. Last week, Aaron had cuts on his face from the straight razor, so at the “meeting” everyone decided Aaron was to use an electric razor. (This is the same woman who used shaving cream and ruined the last electric razor, so we wanted to be specific.)

3. He also told her Aaron hadn’t had a BM since 1pm on Sat. (that’s over 55 hours) and asked her to consult the toileting chart in the communication notebook.

4. He told her to give him yogurt, some of the fiber stool softener, and try to put him on the toilet.

5. The direct care staff person listened, but we have no faith she will do anything.

ADDITIONAL INFORMATION

RAZOR

We traded electric razors when we picked him up this weekend to see why the staff was having such a hard time using it. When Tom checked the electric razor he found out no one had emptied the hair inside the razor in ages and it was full, full, full. Apparently, these were women and they didn’t use razors, so didn’t know they had to be cleaned. Who knows how long … gross, gross…we won’t go there.

Once Tom cleaned it out, the razor worked great. Previously, Tom has showed staff how to clean it out, but apparently they were too lazy, didn’t care, forgot, or were incompetent.

Residential Agency

Because of our continued frustration with the direct care staff, and other agency changes (like they went bankrupt) We hope to get Aaron out of his current agency’s care ASAP. I’m still aggravated his residential supervisor insisted on that meeting last week, and lied about Aaron losing his Medicaid Waiver, because he knew that would motivate us to come. But, basically he wasted our time and was on a power trip to show parents their place….

HUD

I found out each county has different timelines, paperwork and rules. I met with the “receiving county” counselor from HUD and she was wonderful. The meeting took about 2 hours, and I’ll talk about that in another post.

I dropped off Aaron’s current “nondriver” state ID at the HUD Warren Co. office. I also met with the Butler Co. HUD person and signed her paperwork for the extension. (probably drove close to 60 miles). Called current landlord and she FAXed the extension letter.

To: Sending County HUD and Receiving County HUD

Re: Aaron Ulrich, HUD extension

From: (guardian)

July 17, 2011

On behalf of my son, address, we are still in the process of moving to ___ county. We are requesting a 30 day notice to continue at current address in current county.

Thank you.

Mary E. Ulrich (guardian)

Apparently, we will need to repeat this process again next month, if things still aren’t completely in order.

HOUSE in Receiving County

Potential Good News:

The landlord (non-profit company we have had for over 13 years) is going to get back to me next week (person on vacation, of course) about buying a house in our new County.

We think they do a good job.

Aaron could use his HUD voucher and rent from them.

If they buy a house, Aaron would have to start paying rent by his 120 day limit or lose his voucher.

So (vacations or not, new babies, new staff, new carpet or appointments not withstanding) Aaron has to be in his new County by the 120 day limit.

I called and left a message with the director of the new county.

This would solve the problem of “parents owning the house.” You know those evil parents who always try to take advantage of their children:)

IF IF IF this works, we would then have to begin the process of moving Aaron’s Medicaid Waiver to a new company, and

Then we would need to get a roommate, and make sure, not only are the two guys compatible, but also their funding is compatible.

This is a positive bit of news. YEA, *crossing fingers*

DOCTOR APPT

Aaron’s Medical Doctor said to continue the same meds for another month. He said it didn’t look like the Zoloft was helping much, but it was such a small dose he thought we would just see how he did. Aaron was as calm as ever in the Dr’s office. It’s amazing, we try to explain his anxiety attacks and he’s sitting there with his leg crossed, playing with his baseball cards happy as can be. Aaron’s blood pressure was better than anyone’s in the room. Next appt. August 29. Aaron really likes the Doctor.

Communication: S/LP

The speech therapist from last week’s appt. said she wasn’t going to recommend Aaron get an IPAD because she knew his medical card would not pay for it. She would, however, recommend the PECs program. My friend, Patty from the Arc gave me a copy of formal regulations which said Medicaid might pay for the device after Medicare turned it down.

After I passed on that information, a couple emails and calls, we told her we would buy the IPAD device, but we needed a speech therapist to tell us what apps… worked with Aaron.

She recommended a therapist who worked with adults. (Ironic that this is the same place Aaron went for speech therapy for over 15 years.)

I told her Easter Seals also had an IT guy who might be able to recommend some tech applications.

I’m thinking we’ll buy the device, and then if Aaron lives close to us, we can figure out how to get him to therapy (it will be a reasonable distance.) Aaron’s Doctor gave us a prescription for the speech therapy.

Thanks for all your help. Can’t wait to see what this week brings.

Ps. Penny, Would you send me a note to let me know if Aaron had a BM? I forgot to give you Aaron’s yogurt for the week, will you be shopping and able to pick some up? I think you have plenty of raisons and other fiber snacks.

Maybe we should start doing midnight dances or sacrifices to Mother Nature.

Comments

Please share your thoughts. Do you have any tips for housing for people with disabilities? Life is either a daring adventure, or nothing at all. (Helen Keller) Is it possible to look at this HUD journey, as a trip on the ferris wheel? The highs and lows are just part of the adventure? Have you ever felt stuck at the top?

Keep Climbing: Onward and Upward,

Mary

Related Post:

The Right to Communicate and What Parents are Communicating: We are the experts.

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