Building Brandon's Home

A few weeks ago I spoke at the Texas Parent to Parent Conference concerning how I set up housing and services for Brandon.  I decided I needed to post of this because there was a great deal of interest and plenty of great questions.  So this is for all parents trying to make decisions. 

After Brandon finished high school at age 18, we made the decision to move closer to his school for him to participate in the “Adult Transition Program” which works with him to age 21.  I looked at several living options, including rentals in the area (apartments and houses), and buying property in the area.  Because rental was so expensive, I opted to buy a condo 5 minutes from the school with a 30 year loan period.  I knew once we left the school in four years I would be able to recoup most of the money spent on the expenses to live in the condo due to increases in housing prices in Austin.  I put the house in my name and Brandon paid his fair share as required by SSI (see my SSI post).

For Brandon I needed a few key features to the property such as:

• As few attached walls as possible.  Brandon loves music and can sometimes have the TV and the computer blasting with music.  I wanted to make sure we didn’t have a noise issue.
• Brandon likes baths.  So I needed to have a bath-tub available for him. 
• I wanted an accessible unit if possible but would consider others. 
• I wanted to have parking close to the unit. 

The condo we purchased had all the above except it was not accessible, but close to meeting Brandon’s accessibility needs.    

Brandon and I moved into the condo for the first year.  I shortly realized that Brandon (now 19), did not need me for most of time during the week, but he did on the weekends.  I decided to take baby steps and started using respite hours through Brandon’s Medicaid CLASS program at least one weekend a month, so Brandon would get used to having someone with him for 24 hours several days at a time.  The first few attempts were difficult for both Brandon and I because we had both been with each other for every weekend for 19 years.  It was particularly hard for me because I had no idea what to do with my time.  This didn’t last long, and I was able to fill the weekends very quickly.  Brandon began to like respite weekends because he was able to choose what he wanted to do and they were always fun. 

After 1 year in school, Brandon, his personal network and I decided to look for the perfect person to live with Brandon in the condo.  I still had my house in Dripping Springs and Brandon’s condo in Austin.  We spread a wide net to look for the right person.  I put ads in Craigslist, Care.com and everyone on Brandon’s network sent out the job description.   We had 45 applicants.  However, one of the network members found a person working part time at the School for the Blind and Visually impaired.  I call this person Brandon’s “companion”.  I found that when I named this a co-parent I had less interest.  I hired this person (a guy) and Brandon and his companion moved into the condo.  In the beginning I was at the condo many times each week.  I worked to train the companion and helped assure Brandon everything was fine.  Brandon loves music and so did his companion, so they did a lot of playing and listening to music.  Transitions between the house and the condo were hard for the first 6 months, but after 6 months Brandon seemed at ease.   

Our arrangement:

•  Brandon came home each weekend and stayed at his condo during the week while in school.  On occasion the companion would do a respite weekend. 
• In the summer Brandon would stay at my house for 1 month, but otherwise live at the condo (except weekends). 
• The companion was paid for “awake hours” Sunday evening from 7:00 to 10:00 pm.  Monday, Tuesday, Wednesday, Thursday and Friday mornings from 6:00 to 8:00 am and the evenings from 7:00 to 10:00 pm (except Friday evenings).  A total of 25 hours paid through Brandon’s CLASS Program as habilitation hours. 
• In the evening hours the companion stayed at the condo with no traditional pay except free rent, electricity, gas, trash, cable/internet and home phone.
• I provided a car for Brandon transportation. 
• Brandon’s SSI payment paid the mortgage payment.
• Brandon has a credit card for use of other items such as food, but I never keep a large amount on the card.  The card does get lost. 
• Brandon has a reminder system for basic items such as time to get up, brush my teeth, get clothes ready for next day and take a bath.  We started using this simple reminder system you can buy on amazon.  The device is called MedCenter Your Minder Interactive 6 Personalized 10 sec Reminder Clock with AC Adapter.  Within two weeks Brandon was on a schedule and doing all the reminder items automatically.  I couldn’t believe it.  Within 6 months he was doing them before the alarm would go off.
• Brandon was participating in a program through the University of Texas and was able to find some great apps to assist with tasks.  The one I like the best is Autismate.  You can take video of steps for a task such as doing laundry or shaving. Brandon would work through each step programmed in his IPAD.  Repetition is good.   He has graduated from some tasks. 

This worked great for 2 school years.  Brandon became so much more independent learning to make some of his own food, doing the laundry, being independent in all things in the bathroom, and cleaning up his room.  The last school year we had changes in aides and eventually issues resulting in changes to the plan.  I took the opportunity to move Brandon and his companion to my mother’s house next door to mine.  I had been modifying the house to meet Brandon’s needs.   I wanted to have better oversight of Brandon’s care.  

Some features of the new house.

• The new house has video surveillance in all rooms downstairs but not in the companion room.
• The video surveillance has two way communications. I can talk to Brandon and he can talk to me.  We can do this through the IPAD.  We used an app from Lowes called ismartsee-A. 
• Brandon has an app he can use to call me or my brother.
• He has access to FaceTime which he uses very well.
• The house has digital entrance.
• The bathroom has a drain. Brandon sometimes gets a little carried away with the water in the bathroom and has flooded the floors.
• Brandon has his own large bathroom and the bathroom can convert for wheelchair use.  The cabinet can be converted for wheelchair use.
•  The companion area has privacy and a place to get away for some alone time. 
• I designed the house so Brandon could have another friend live with him if we were to find that perfect match.
• We have dry eraser boards in the house letting Brandon know the schedule for the week and the month. 
• We are trying to have jobs close to his house.
• We will be looking for a expanded reminder system.  When I find the right one I will update here. 

Lesson’s learned -

• Brandon’s new house will be his house to come and go 7 days a week just like any roommate arrangement.
• Having closer proximity to Brandon’s house works better.
• Male companions are preferred, but will consider a female.
• Use of my car is not preferable.  Attendants having their own car works better. 
• More people coming in and out of the house are also preferable. 
• Continue to work on independence with the goal to get Brandon as independent as possible in his own home. 
• Most important - I need to listen to Brandon.  Brandon is very smart on who is best to live with him.    
• For all parents looking at this, start working on independence as soon as you can.  For Brandon it is un-doing his dependence on everyone helping him his entire life.  Looking back now, I wished I had worked with him to be more independent in everyday tasks. 

 At the end of the school year and the end of Brandon’s Adult Transition Program Brandon’s companion moved out.  Brandon is currently living in my home in the evenings, but comes and goes from his own home next door.  Brandon and I have decided to spend the summer working on what the new living arrangement will look like.  We both are considering a roommate type arrangement.  It will require Brandon to become more independent.  We have started to document all tasks where Brandon needs assistance and starting to figure out solutions to helping him become more independent.  Most importantly, I want Brandon to feel like the house is his home.  I think that needs to look like the home that most young men build for themselves after they leave their parents. This includes roommates paying for some of the costs of the house.   That is our goal and we are working on finding those perfect matches.