Climbing Every Mountain

photo credit: numberstumper

Should I rent a billboard| Medicaid Waiver Roommates Part 9

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

Visiting House #3: Picnic and Social Gathering

First Meeting

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

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

Flurry of Emails

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

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

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

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

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

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

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

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

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

1. We were still in the exploring stage.

2. Nothing was definite.

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

First Date

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

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

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

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

Company Picnic and Social

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Parent Talk

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

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

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

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

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

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

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

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

Both families shared their thoughts and worries.

We started on our list:

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

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

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

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

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

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

Landlord Issues

The biggest concerns were about the landlord.

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

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

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

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

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

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

Second Date?

I sent emails thanking everyone.

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

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

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

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

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

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

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

Aaron would not be a good match.

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

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

COMMENTS

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

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

Keep Climbing: Onward and Upward.

Mary

photo credit: monkeyc.net

Roommate Hunt Continues: Medicaid Waiver style| Part 8

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

HUD UPDATE:

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

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

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

Potential Roommates: House Number 3

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

Support Coordinator

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

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

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

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

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

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

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

Visit House #3: Perfect Ranch near Park

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

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

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

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

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

Stakeholders Meetings

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

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

Ecological Inventory

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

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

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

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

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

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

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

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

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

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

Discussion

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

TAKE-AWAY

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

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

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

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

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

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

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

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

COMMENTS

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

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

Keep Climbing: Onward and Upward.

Mary

photo credit: piermario

Searching for a Roommate: Medicaid Waiver style| Part 7

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

HUD UPDATE:

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

What a blessing.

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

Roommate Search

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

Roommate #2: Van into houses

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

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

Former Roommate Andy

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

So, Andy no longer lived there.

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

Parents believe in Segregation

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

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

Barney

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

Barney likes to fish

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

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

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

Parents Own the House

The house was owned by Barney’s parents.

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

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

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

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

Match?

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

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

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

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

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

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

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

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

TAKE-AWAY

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

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

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

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

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

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

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

COMMENTS

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

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

Keep Climbing: Onward and Upward.

Mary

photo credit: 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.

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: smcgee

Happy First Birthday| Blog for Parents and Caregivers of People with Disabilities

Can you believe it? On July 21, 2011 ClimbingEveryMountain.Com celebrated its first birthday.

Fellow Climbers

Parents, Caregivers, Advocates, Friends

Parents, Caregivers, Friends and Advocates of people with disabilities need each other. Our journey up the mountain is exhausting and treacherous.

We climb, not because we want to, not because we think it is a fun challenge, not because “it is there”—we climb our mountains out of need—OUR CHILD’S NEED, OUR NEED.

For the past year, this blog has been a basecamp where interesting people from around the world add their ideas, personal stories, ups and downs, advice and expertise. To everyone in our Climbing Every Mountain Community, your love and friendship means so much.

There have been 120 blog posts of original content and 1,261 comments. Here are the first posts which explain what this blog is all about. I’ve updated a couple things, but the mission holds true. I hope you agree.

Shouting my Commitment | Is anybody there?

Climbing Every Mountain is a Team Effort| What this blog is about

I am thankful for each of your comments, emails, phone calls and the many other ways you have reached out to our team. Together we are better. Together, we can each work for inclusion in our own way, and the ripple effect will be that our individual efforts will change the world, not only for people with disabilities, but for all of us.

Google Analytic Statistics for July 21, 2010 to July 21, 2011:

There have been 12,184 visits to http://ClimbingEveryMountain.com from 114 countries/territories. The top ten include: US, Canada, United Kingdom, Australia, Philippines, India, Ireland, Brazil, South Africa, New Zealand….

3,664 returning visitors. 19,216 Page Views. 1.58 pages a visit.

I’m sure some of these visitors were looking for The Sound of Music or some mountain peak vacation adventure, but I know many were looking for our basecamp for parents, caregivers and advocates. I know Google expects visitors to spend more time on the site and look at several articles each visit, but thank you for a terrific start.

photo credit: hfb

Tech Support

Climbing Every Mountain has a terrific group of people who help with the tech support. I’m a novice blogger and they have held my hand and guided me up the social media mountain. Real mountain climbers need good equipment and guides, thanks for giving me a safety net and strong lifeline:

Tim Gary

Mindcue: Brilliant Ideas Deserve Brilliant Websites (security, tech support, hardware and software issues, fighting off hackers, bad guys, and encouraging a very insecure webmaster.)

Johnny B. Truant

Johnny creates inexpensive websites and helped me with the start-up, plus he coauthored, Question the Rules, a course for non-traditional thinkers.

Cheerleader Team

Alison Golden

The Secret LIfe of a Warrior Women Alison is my blogging partner and has been a terrific source of information and encouragement. We met at Question the Rules. She is a strong advocate for her children. Her gentle spirit and humor are her secret weapons in being a warrior woman.

A special shout-out to my friends at OVRWA. You help me believe in “happy ever afters” and pick me up when I post an article and get more spam than comments.

Learning to venture into the real community outside Disability World is one of the cornerstones of inclusion. If we want this for our children, we need to learn to build community for ourselves. Alison and OVRWA are helping me learn to be “normal.”

Mentor Team

Sylvie and Michel Fortin

Success Chef Academy Every Wednesday night, Sylvie and Michel serve up an “over the shoulder” look at how to create your own success story. In their informal style, they have taught me about the back and front end of an online business. I’ve come to depend on their advice and personal encouragement. Many of my future goals for Climbing Every Mountain are based on what I am learning in the Success Chef Test Kitchen.

James Chartrand

Men with Pens has also been generous in her encouragement. She is working for social justice in her own way, and reminds me each website must have simple design and good writing. It was her gentle push that finally gave me the courage to take the leap into blogging.

Chris Brogan

Chris Brogan has more ideas than anyone I know. He also takes those ideas and makes companies, and they make money. (That’s certainly different than anyone I know in non-profit and disability world.) He has a geek brain, but… he can translate it into everyday, everyman language. Chris made one tweet about Climbing Every Mountain and I got more traffic that one day, than in a month. He is the guru of social media and helps non-profits. Plus, he talks about his kids and parents. Pretty neat.

There are many others, thanks to each of you.

photo credit: Ѕolo

Aaron wouldn’t let us end a birthday celebration without a song. Blake Roberts suggested The Climb as a theme song for our Climbing Every Mountain blog. I would like to ask you to listen to the inspiring words and feel proud of everything YOU have accomplished this year. Enjoy the digital magic created by Blake Roberts and Snoopi Botten using DecTalk, an augmented communication software program.

Pastor Snoopi Botten and Blake Roberts have added their magic digitalized effects to The Climb, (click on link).

Keep Climbing: Onward and Upward.

Mary

Comments:

What was your favorite post this year? Any suggestions or comments for next year?

Popular articles:

America the Beautiful|Through the autism car window

For more about Blake Roberts and Snoopi Botten, check out Do you hear what I hear, Do you see what I see? for their amazing story.

photo credit: diegodiazphotography

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

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

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

Here’s the recent status report:

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

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

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

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

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

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

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

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

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

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

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

Question:

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

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

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

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

Can’t wait to tell you what happens next.

Comments

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

Keep Climbing: Onward and Upward,

Mary

Other Related Posts You Might Find Interesting:

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

HUD Tips for People with Disabilities| Part 2

Forgetting Spells, Inclusion and Happy Endings

photo credit: John-Morgan

HUD Tips for Parents and Guardians of People with Disabilities| Part 2

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

Parents and Guardians of People with Autism and other Developmental Disabilities often feel helpless, surrounded in myths.

We are told we have no choice in our lives: we should just “live with” our conditions; and even worse, we should be thankful for the services we have—no matter how awful.

HUD Myth #1: HUD rent vouchers CAN be transferred to another county.

For many years I was told we would not be able to transfer the HUD voucher for Aaron, our son with the label of autism.

Now, maybe some regulation just changed, or maybe the truth was buried in the millions of words on the most complicated website I know (HUD.gov) but until recently this was the common myth everyone used. NOT TRUE.

Aaron is the “head of household” and his “housing choice voucher” (HCV) is “portable.” This means Aaron could move to another county– and even another state if they have a HUD program. The giving and receiving counties have to agree on some things, but it can work.

This is amazing news for us:

1. It means Aaron will be able to live close to his family.

2. And after his parents die, Aaron will be able to live close to his brother Tommy, who will become his guardian. Tommy is a radio frequency engineer and gets transferred around the country.

3. It means Aaron can move to a place which offers him better program options.

This week I met with a HUD counselor and had the best experience. She was knowledgeable, friendly and cared. She took a personal interest in helping us. I can’t say enough good things about her. She is our blessing of the week.

The request for a transfer is quite simple. I sent this email and then met with the counselor to sign the official forms the following day.

Request to PORT

June 30, 2011

I , (name) at (address) am giving my 30 day notice to move my HUD voucher to (name) County.

Thank you,

Signature

Additional Information:

• As I understand it, the deadline to file for the transfer is the first of each month. This was a little tricky because I learned of this at 4:55 pm on June 30th. So, I had to make a decision in the 5 minutes before the office closed for the month. If I would have filed on July 3rd, the 30 days would have started on July 31. So we would have lost a month.

• If you are the guardian, you will need to provide proof with your official guardianship paperwork.

• The next working day (after the holiday) I met with the counselor from the “sending” county to sign the official paperwork.

• The counselor then faxed the paperwork to the new “receiving” county and gave notice to the owner of Aaron’s house. This was a shock to the residential company and the owner contacted me before I could even catch my breath. Which was an unpleasant experience I knew would come eventually, but I didn’t expect it that day.

• Aaron’s housemate will no longer have the rent subsidy, but he can apply to HUD. The county has an emergency “bridge” rent fund until he gets one, so he will be okay.

• I am to contact the new county and make an appointment with the HUD counselor.

• If this was a normal HUD family rental situation, the new counselor would hand me a list of available HUD houses or apartments to rent, and then I would begin a selection process with potential landlords.

• Because we are part of “Disability World” we have another whole set of issues (next article).

Timelines: The sand is shifting in the hourglass

Aaron’s rent will stop on his current residence on July 31. If we still don’t have a new place for him to live, then we can petition HUD to get another 30 days extension but will need a letter from his landlord saying that is okay.

If we can’t find anything by August 1st we can ask for up to a 60 day extension from the local housing authority in the new county.

If we do not use the voucher by 120 days, then it is GONE—Poof! And we would need to apply again, if and when they open the window on new applications.

Change is possible, but not easy

So, the die is cast. The decision is made to move. And while there is relief, there is hope for a better life…I’m trying hard not dwell on my fears. I know this is a step in the right direction, but geez… I do keep getting the image of Dorothy from Wizard of Oz, looking into the hourglass with panic in her eyes.

Next article, I’ll talk about how Disability World complicates “just find a place to rent.”

Comments

Please share your thoughts. Do you have any tips for housing for people with disabilities? Have you ever just taken the leap of faith that all will work out? Am I nuts? Should I just have sucked it all up and stayed where we were? Do you ever experience a “counselor” in a government agency who is so helpful, you just want to give them a hug?

Keep Climbing: Onward and Upward,

Mary

Other Posts You Might Find Interesting:

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

What would you do? Case of Trash vs. Treasure or Staff vs. Person with Disabilities

Drinking Beer and the Dignity of Risk

photo credit: shapeshift

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

Housing for Urban Development (HUD.gov) has a “housing choice voucher program” (HCV) for people with disabilities and other low income families. They describe it as a three way partnership between HUD, the owner and the family.

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

Over ten years ago, I learned about the HUD rent vouchers from my brother Steve, and the actual process was like trying to win a radio show contest: There was an open enrollment period on one day, call between 1:00 and 3:00 pm and the first 100 callers would get application forms. Another open enrollment period may or may not happen again.

On that particular day, I went to the County Board of Developmental Disabilities and using all five phone lines, we dialed in as fast as we could. Fortunately we “won” the chance to get an application. Because we were the first with intellectual disabilities in our area (of course) it took us a year to sort out all the details and paperwork for two non-married people to be considered a “family” with common housekeeping. Thanks to other pioneers like us, the Fair Housing Act, ADA, and other federal legislation I think this is easier now.

Supplemental Rent Subsidy

Aaron, our son with the label of autism, and his housemate only pay 1/3 of their income for rent, which is under $100 each and a rent supplement is paid directly to the landlord by HUD. It is based on the “Fair Market Rent” (FMR) and varies from city to city.

Aaron’s voucher allows him to rent in a neighborhood, not a segregated housing project. It is probably not the highest rent a landlord could get, but it offers a long term renter and a guarantee check each month. Most of the available HUD houses are in less expensive neighborhoods.

A non-profit board became our landlord. They even got a grant from the state for the $10,000 down payment for the purchase of the house. I understand there are some programs to help make the houses accessible under ADA, if it is necessary. We will be looking into that in the future.

Aaron was named the “Head of Household” which means he can take the voucher with him. It is “portable” and he could move it to another county or even state. It is my understanding, not all waivers are “portable.”

Additional Information

There is only one voucher for each house. I always thought this was a gift Aaron gave to his housemate.

Systems Change

I also am proud that our pioneer efforts have given many more people with disabilities and their families the opportunity to live in neighborhoods. My advocacy efforts at this “system change” have helped others. In our county, now most people with disabilities are either on HUD rent subsidies, or on their waiting lists.

House of Cards

I’ve written about some of our experiences and the multiple agencies being like a House of Cards 1, House of Cards 2, House of Cards 3.

I like to think of myself as a “glass half full” person, but when the agency which was providing residential support went bankrupt, I knew it was time for a fresh start to recover from the abuse and neglect we had dealt with these past ten years. More in the next article.

Comments

Remember there are no “right or wrong” answers.

Please share your thoughts. Do you have any experience with HUD? Any tips for housing for people with disabilities? Have you ever just thrown in the towel and started over?

Keep Climbing: Onward and Upward,

Mary