Archive for July, 2011
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.
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.
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.
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….
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
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.
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*
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.
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.
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,
All my best,
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).
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.
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.
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.
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:
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
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.”
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.
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 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.
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.
All my best,
What was your favorite post this year? Any suggestions or comments for next year?
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.
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.
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.
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,
All my best,
Other Related Posts You Might Find Interesting:
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.
• 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.”
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,
All my best,