Posts Tagged ‘Ohio County Boards of DD’
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.
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:email@example.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
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.
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.
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.
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.
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.
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.)
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.
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.
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).
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….
Keep Climbing: Onward and Upward
All my best,
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!
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.
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.)
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.
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.
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.
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,
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
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.
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.
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?
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!
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.
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.
All my best,
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
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.
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?
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.
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.
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.
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.
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.
All my best,