Housing and CMT

[Guest guest]

Dear ers,

One of our members sent me this to post. A while back we were having

a discussion of housing and CMT issues. One thing this article

mentions, is that CMT is a " form " of Muscular Dystrophy, and let me

just interject that is NOT! I read this story before, and not sure if

I posted it to our group or not - bear with me, I get tons of stuff

in my email box regarding CMT or disabilities everyday - so just busy

me, no Alzheimers here! lol Pictures and full story at this link

http://www2.ljworld.com/news/2005/jul/13/theres_no_place_home_accommod

ate_special_needs/?city_local

~ Gretchen

There's no place like home to accommodate special needs

Building around disabilities

By Mike Belt Wednesday, July 13, 2005

There have been times the past few months when Vania Bruner parked

her van a short distance away and sat and looked at the house being

built in the 1800 block of Haskell Avenue.

Early this fall Bruner, her husband, Gail, and their two young sons

will move into that house. Then, no longer will she have to sit in

her wheelchair and wash dishes unable to see the bottom of the sink.

No longer will she struggle to turn on light switches she can't reach

or open doors with knobs difficult to grasp.

" We haven't been putting in any luxuries, " Bruner said during a

recent visit to the house. " To us just getting in the doors or

getting in the shower will be easier. "

Bruner suffers from the physically debilitating Charcot-Marie-Tooth,

or CMT, disease, and so do her children, Luke, 6, and Logan, 4. It is

a neurological disorder that affects the sensory and motor nerves and

which leads to muscle weakness and atrophy. The legs, feet and hands

are especially affected.

In addition, Gail Bruner has developmental disabilities and thus is

limited in what jobs he can handle. He has a good job, though, his

wife said, working in environmental services at Lawrence Memorial

Hospital.

Their new house is being built through Tenants to Homeowners Inc., a

nonprofit Community Housing Development Organization that helps

tenants become homeowners through a variety of education,

construction and creative financing programs. The organization builds

new homes or rehabilitates old ones by administering the city of

Lawrence's first-time low-income homebuyer program. It also acquires

affordable property for its Community Land Trust Program for new

houses.

" There is no way we could have done this without this organization

behind us, " Vania Bruner said.

Since they were married 11 years ago, Vania and Gail have lived in a

mobile home on Gail's parents' farm near Rantoul, a small community

southeast of Ottawa. That is a long way from Lawrence for Gail's

daily drive to work and for Vania and her children to travel for

physical therapy here.

Though the mobile home has outside lifts at the doorway for

wheelchairs, it lacks a roll-in shower or garage where Gail's car and

the Vania's handicap-accessible van can be parked. It doesn't have a

handicap-accessible bathtub. It doesn't have low countertops or

cabinets that can be easily reached. Nor does it have special door

knobs and toggle light switches.

All of those things will be available in their new house.

The new 1,800-square foot, three-bedroom house is bigger than TTH

normally builds, but the extra space was needed to accommodate the

simultaneous use of three wheelchairs by Vania and the children. The

house also has a roll-in shower and doorway thresholds that are flat.

" It will be nice, " Vania said. " The only thing will be that they

(children) will have to get used to not being near their grandparents

and it was kind of neat for them to be able to live out in the

country. "

TTH entered the Bruners in the Community Land Trust Program, which

makes them partners in the home ownership. The Bruners purchase the

house but lease the land from the trust. With land costs removed, the

homeowners can pay a more affordable price. A long-term land lease

gives the homeowner exclusive rights to the land for 99 years. In

exchange for the subsidy, the owners agree to limit their resale

price and ensure that the home remains affordable for the next buyer

should they decide to sell and move.

Typical houses built through the program range from $100,000 to

$125,000, said Buford, TTH executive director. In the

Bruners' case, Vania has had extensive experience in seeking out

grant funds from a variety of sources to help pay for her family's

special needs. By doing that she has been able to come up with

$30,000 to help pay for the house. It is a process she learned so her

family can afford daily living expenses as well as paying for

wheelchairs, braces, walkers and the van.

" We don't have credit cards and we don't buy big TVs, " Vania said. " I

feel we've kept ourselves out of financial problems. "

Buford credited Vania Bruner with knowing what the family's special

needs were when the house building began.

" These are things we don't normally deal with but she knew exactly

what they needed, " Buford said. " She is very organized. "

How to help

The Bruners still could use help obtaining appliances such as a

refrigerator, stove range hood with light, patio cover, yard sod,

lawn service and landscaping, assistance in hooking up a computer,

which Vania Bruner uses for finding and obtaining grants, kick plates

for doors, automatic or wooden blinds, fencing and an automatic slide

gate.

For more information, or to inquire about making monetary or other

donations or volunteering labor for certain projects, call 842-5494.

The effort to keep costs down continues for the Bruners. TTH accepts

monetary or volunteer labor donations for its projects, Buford said.

The Bruners still need assistance in obtaining some appliances, kick

plates for all doors, remote control or wood blinds for windows, sod

for the yard, a patio cover and lawn service.

CMT disease is hereditary. Vania Bruner's father also had the

disease, she said, but the family has not been able to trace the

disease to any other ancestors. Vania also knew that there was a good

chance that if she had children, at least one of them might also

inherit it. She said she knows some people are critical of her for

having children.

" This what I wanted to be, " she said of being a mother. " I really

didn't think the children would get it, but I guess God felt like we

could handle it. "