Posts Tagged ‘parenting adults with autism’
The Values of Inclusion: Valuable across the World
Jack Pearpoint is a true visionary. He shares his vision with others. I recommend subscribing to his Inclusion Network YouTube Videos (link below the video).
At the Down-Under Inclusion Institute, Jack showcases Heather Simmons from his trip to Sydney, Australia. “Heather summarized the simplicity and complexity of living an inclusive life in a welcoming society.” Enjoy. Isn’t it nice to know the ideas of inclusion are spreading around the world.
There is a content organizer below if you want to print it out and take notes.
Study Guide or Content Organizer: Print out and take notes while watching video.
The Values of Inclusion by Heather Simmons
Everyone is born “in”
All means “All”
Everyone needs to be “in”
Everyone needs to be
Everyone is ready
Everyone needs support
Everyone can learn
Everyone can contribute
Everyone can communicate
Together we are better
Any questions? Comment? Anything you would like to share about this video or others?
Keep Climbing: Onward and Upward
All my Best,
Roommate Needed in Mason, Ohio
Aaron is a great guy who likes other people. He is looking for a roommate.
Aaron is 38 years old. He attended Lakota Schools and is currently in the Goodwill/Easter Seals Day Program in Lebanon.
Aaron likes to go for walks, ride the exercise bike, swim at the community center, go out to eat, listen to music, look at books, baseball cards and get involved in other inclusive activities in the community. He likes to be around other people.
He loves to go on vacations with his family and ride the trolley bus in Gatlinburg. He likes his Sunday visits with his family and playing with his niece. His family only lives a couple miles away.
Aaron doesn’t talk with many words, but he finds ways of telling everyone what he wants. He repeats phrases and is noisy which could bother some people.
The ranch house is in Mason, near a local park. It is wheelchair accessible. The home is owned and maintained by the Housing Resource Group of Resident Home, so this will be a permanent residence. Aaron has lived in a house managed by this non-profit for over 11 years and we feel they do a great job. We hope he can live here for the rest of his life.
Aaron has a level 5 Medicaid Waiver which will help pay for the 24/7 staff. He needs a roommate who is also on a waiver or private pay. We are working with our Warren County Board of Developmental Disabilities.
Anyone who has lived with other people knows the importance of finding a good roommate match. Aaron would like a new friend as well as someone who could be part of his extended family.
We would love for Aaron’s new roommate to be from the Mason community. We would love if another family would want to share all of our lives, so we could be a support to each other.
Aaron currently has staff who are loving and have known him for many years. They are part of our extended family and have hearts big enough to include another person.
If you know of someone who might be interested, please call me at 513-336-8271.
It is difficult to describe Aaron. He is loving and wonderful, but a prospective roommate also needs to know Aaron is noisy and that might be an issue for some people with sensitivity to sounds. So, how can I give Aaron respect and dignity and yet be honest.
Aaron had the same roommate for 13 years. He and Jack are good friends and care about each other. Leaving Jack was one of the hardest parts about moving to a new county. Jack was a gentle man who was older than Aaron. They had their own hobbies and interests, but would go into the community together for shopping, large and small group activities and taking walks with their caregivers. Jack and Aaron had their own way of communicating and respected each other. We can only hope we will find someone like Jack, and as you know, everyone is unique. We ask your prayers.
Any suggestions greatly appreciated.
Keep Climbing: Onward and Upward
All my best,
“Representative Payee”| SSI, SSDI
When Aaron, our son with autism and a developmental disability, moved into a house with another man, we became his legal guardian.
It was the only way to protect Aaron legally. It was the right thing to do.
One of the first decisions became who was in charge of finances–the individual, the residential provider, or the guardian.
Certainly if your son or daughter is capable, that is the first choice. Remember, the individual can get support on their ISP (Individual Service Plan) to help.
The Residential Provider
If you are the parent of an adult with autism or other disability who is not able to handle their own finances, then this service can be written into the ISP (Individualized Service Plan) and handled by the agency or residential provider.
The residential provider cannot charge for this service, but it is one of the services in the Individual Option Medicaid Waiver.
For 13 years, my husband and I let the residential provider be the SSI and SSDI “representative payee” and handle his finances.
We added checks and balances:
In Aaron’s ISP, the company would send us monthly statements by email and the County Service Coordinator checked the Residential Provider’s records, so it worked great.
After all, as parents we know we won’t live forever, why not put the financial system in place while we can still make sure it works.
Checks and balances plus it was less work for us–YEA!
Guardians become “Representative Payee”
Last month we fired our residential provider. This made things tricky so I decided to become the “representative payee” myself.
Here is what I’ve learned:
How do Guardians become “Representative Payee” for SSI, SSDI?
Go to your local Social Security Office, you cannot do this online. Allow at least an hour.
Your child’s Social Security Card
Your Social Security Card
Your valid Driver’s License with current address
The bank account number and routing number for the automatic deposit.
You will need to have a face to face interview.
Make sure the agent changes the information for both SSI and SSDI if that is appropriate. They are two separate systems.
You will be given a contact person for your future needs.
You can call 1-800-772-1213 and ask for an “agent,” in addition they have recorded information on the responsibilities and frequently asked questions about “representative payee.”
Timelines are based on the first of the month
i.e. Automatic social security deposits are on the first and the third of the month.
It will take a month or so to get the deposit information transferred.
Keep Climbing: Onward and Upward
All my best,
Amazing News: A House and Roommate| Part 12
Miracles Do Happen:
Last week, a non-profit agency bought a house near our home. They will accept Aaron’s HUD housing choice rent voucher.
Today, we met with a young man and his mother and we think we found a roommate match.
For those of you who have been following our journey to move Aaron, our son with the label of autism, home to our county, this is Part 12. You know how complex and difficult this has been. Here is the link to Part 11: 1st miracle| Aaron needs a Roommate| Part 11.
Even with the two miracles, don’t breathe yet. But we now have two pieces of the triangle in place.
The third part of our miracle triangle is great staff. I’ve talked about the critical importance of staff in Caregivers: Part 1, 2, 3
But as Scarlett O’Hara says, “I’ll think about that tomorrow.”
Here are the details in two emails: one from early this morning (2:30 AM—mothers never sleep); the second is after our dinner meeting (9:00 PM—mothers put in long days).
Task Analysis for Monday Morning:
From: Mary E. Ulrich [mailto:firstname.lastname@example.org]
Sent: Monday, September 26, 2011 2:28 AM
To: Everyone I could think of who might be part of this move
Subject: Aaron’s house
I met with the director of the non-profit on Friday. He said they closed on the new house last Monday and so we can begin the countdown to a move-in date of Nov. 1. Yea, Yea!
Thanks to the Non-Profit and the County Board of DD for making this new resource available to Aaron and our community.
So now there is much to do to be ready by Nov. 1st.
The director of the non-profit is finalizing the paperwork to become a HUD landlord in W. County. There will need to be an inspection and he is negotiating the rent…. As soon as we get Aaron’s roommate, we will be applying for three people and a 3 bedroom subsidy (Aaron, roommate and caregiver.) This is what Aaron has had in our past County for the last decade, so I think this should be pretty cut and dry. It is an accommodation under ADA, but is different than the rules for HUD’s definition of “caregiver.”
We have received HUD extensions until Oct. 31st. It has been a lot of running around between counties, but Debbie and Wendy have both been wonderful caring professionals. Thank you for helping me figure out the system.
I need to give notice to everyone in our current county and the current provider by Oct. 1st, which is fast approaching.
I’ve given the notice about moving to Aaron’s current landlord.
This will not come fast enough. Aaron had another “unusual incident” last week where he was not groomed for his day program. (The food he got in his hair on Monday was still there on Wednesday—the staff felt he had not had his hair washed in two days and it was dirty and grimy.) Also, Aaron is running out of transportation money to his day program.) Tom and I are taking Aaron up on Monday mornings, and usually picking him up one afternoon a week.
The director of the non-profit says they closed on the house last week and will begin the remodeling shortly. They are starting with some tree trimming because of the possible danger and then will refinish the floors in the Living Room, Dining Room and move on to the bathrooms. If everything works out well with HUD and we get the caregiver’s designation for the third bedroom then there may be enough rent money to justify new windows (the current windows are casement windows—inefficient and BAD). They are reluctant to begin the bathrooms until we know who the second roommate will be. This makes sense if we want to make accommodations which are specific to the person needing the bathroom.
I think this is a great way to begin because we will want to show the community we will be great neighbors and take care of the house before the rumors begin that two men with intellectual disabilities are moving in. This is what worked on Aaron’s current residence and I have too many memories of Stetennius, Five Mile and other hearings from worried neighbors. It is a mature neighborhood, I don’t expect any problems, but we want to make a good first impression.
Tom and I will be planting some mums and have a couple inexpensive porch chairs to make the place look lived in. The house has been vacant for a long time so a few improvements should impress the neighbors.
I am hoping to hear from the parent of the potential roommate today, and then can set up some visits. This is the next big step.
Then, I understand from the new county board, we will finally get a case manager.
Transition for Aaron
We have been driving Aaron by the house and telling him it is his new home, but I can’t imagine he understands what we are talking about. I’m worried he will miss his roommate of the past 13 years and am sure he will be confused. I want to start some visits to the house as soon as possible. The more familiar he is, the easier the transition.
I’m hoping he will get to have a couple meetings with the new roommate and new staff as soon as possible.
We also need to figure out how to furnish the house. I have begun to take donations from relatives. We probably have about $1000 set aside.
Tom and I furnished Aaron’s first two residences. We are told that if the furnishings belong to Aaron he can take them with him, but I am uncomfortable just taking the silverware out of the drawer and telling them, “Sorry, this belongs to Aaron.” We have enough problems with the current staff as it is and we don’t want to cause problems for Aaron’s current roommate. But, it is expensive to start a new house from scratch.
My family will be having a shower to donate items sometimes this month. I will have to coordinate with the director of the non-profit when we can get a key and get into the house and it’s not a Bengal’s game (if there are any Bengal fans left in Cincinnati by then).
I’m hoping we can set a corner of the garage or one bedroom to begin collecting items.
I began with a couple boxes in Aaron’s current residence and the staff (without permission) gave them away. “What would you do? Case of trash vs. treasure”. (I’m still VERY upset about this. Just add it to the list of why I want to get away from them ASAP.)
Next week I will begin interviewing residential providers. They will need to hire and train staff by Nov. 1. We have met 3 different providers as we visited the 3 potential placements for Aaron. One company impressed us because it was a local company in Mason, but we are open to suggestions. Please email me ASAP. We are well aware that just because a company was good last month, doesn’t make it good this month. Having caring staff will be the second most important variable, after a good roommate.
Well, we have a busy week ahead. Please say a prayer we sell our condo, it is a huge strain on us. We listed it with another agent last week. We have begun to move some of our things into our new condo.
I’m hoping by Christmas we can look at both Aaron and us in our new homes and know we are in a better places, but GEEZ, it’s going to be an action packed couple of months.
Thanks to everyone for helping make this happen for Aaron. Maybe the Bengals could learn from all our teamwork
Any questions please let me know. Have a great week. Mary
About 1:00 PM, the mother of a young man who might be a prospective roommate called on the phone. That went well so we picked up Aaron at his day program and all met for dinner in a local restaurant.
Email to same group at 9PM.
Tom and I always felt one of the most important steps was finding a good roommate for Aaron. We think we have found a good match.
Aaron, Tom and I had dinner with Jim and his mother, and it went very well, so we would like to move forward.
Jim was very friendly. He is the kind of person that hugs everyone and is best friends with everyone in a couple minutes. He has a devoted mom. Aaron kept looking at Jim. I wish he could speak and tell us his thoughts, but he seemed happy. Jim likes to swim and go to King’s Island—both things that Aaron liked to do in the past. Hopefully, they will be able to do many activities in the community.
By Providence, or some divine plan, or dumb luck…Tom and Jim’s mother actually taught at the same school together and used to talk about their kids at lunch. Pretty amazing, eh?
So, if everything works out—drumroll please– Aaron and Jim will be roommates.
Jim’s mother is going to call Wendy at the HUD office tomorrow and see what we need to do to get Jim on Aaron’s list. So we will have 3 bedrooms and Aaron, Jim and the caregiver will make three. So, hurrah hurrah.
Also, yesterday the non-profit started painting rooms and beginning the process to get the house HUD approved. So we are really moving forward. It is hard to believe—this is going to happen.
Aaron and Jim both already have Medicaid Waivers at appropriate levels. So we can begin the transfer of Aaron’s waiver to our new county and start interviewing residential providers.
Finding a good staff will make our miracle triangle complete: (House/HUD—roommate—staff).
My sister Janet, visiting from Kansas, had a friend donate our first items for the house. The director of the non-profit allowed us to begin to put them in the garage.
The painters were there to let us in….
Today went so well, I think I’ll go buy some lottery tickets.
Thanks to everyone who is helping us climb our mountain and move forward. It takes a village….
Keep Climbing: Onward and Upward
All my best,
Hope you’ll share your thoughts and experiences. I’m happy and exhausted and I know we are only about half-way on the move-in journey. Whew! Now on to making a task analysis for tomorrow. Whew! Whew!