Bringing Home the Possibilities

by Kathy Wechsler on November 1, 2004 - 4:39pm

Getting your own place to live is a significant piece of the independence puzzle.

There are many things to consider before going out on your own. Can you pay your bills? Do you need assistance, and how will you pay for it? How will you cover the basics such as cooking, cleaning and laundry?

The housing situation that will work best for you depends on your abilities, limitations and funding sources — and on the options available in your area.

Where should I live?

You might find an apartment or townhouse that can accommodate wheelchairs, or choose a housing complex designed specifically for people with disabilities, with accessible features such as roll-in showers, automatic doors and emergency pull-cords.

These housing options don’t include personal care assistance, however. Attendants can be found by advertising or going through a health care agency. (See “Independence Resources”) Live-in attendants sometimes exchange caregiving duties for free rent or tutoring.

For people needing round-the-clock assistance, there are group homes, assisted living facilities and nursing homes.

What’s right for one person may not be right for another. Here are three individuals who have made the move to living on their own. Each has a different system for achieving independence.

Chris Buhl, 24
Becker muscular dystrophy
Sioux Falls, S.D.

Chris Buhl
Buhl pays his monthly bills and manages his income.

“They built my place with wheelchairs in mind, and it’s meant for wheelchairs,” says Chris Buhl.

There weren’t many accessible apartments or townhouses in Sioux Falls, and those that were completely accessible had long waiting lists, Buhl says. Some didn’t live up to the word “accessible,” offering little more than bars on the bathroom walls.

It took some looking, but Buhl finally found a standard townhouse complex with a unit accessible enough for his needs.

For example, the bathroom is large enough for maneuvering his chair, and the toilet is at the right height for self-transfers. He’s able to pull under all sinks and counters. The washing machine and dryer are front-loading, and all light switches are low.

“Basically, I kind of lucked out in that it was set up so well,” says Buhl, who’s lived in his townhouse for two years.

Paying extra attention to where everyday items are placed, Buhl keeps his food, dishes and silverware in lower cupboards, making them easy to grab. He does his own grocery shopping; cooks with his microwave, toaster oven and George Foreman Grill; and washes his dishes.

With assistants provided through a home health agency, Buhl has help each morning. He qualifies for about 10 hours of attendant care per week through South Dakota’s Medicaid attendant waiver program.

Buhl earns less than the income limit for his state’s Medicaid program, even though he works two part-time jobs, as a salesman at the clothing/accessories store Hot Topic, and as a production assistant at Sioux Falls television station KSFY. (For more on Buhl, see “A Checklist for the Journey”)

Buhl has lived both with and without roommates, and currently shares his apartment with Alex Girard. Besides contributing to the rent, Girard sometimes helps out with such tasks as getting a blanket from a high cupboard.

“I like having a roommate,” Buhl says. “It’s just nice to have that other person here for various reasons. Something could happen, and I kind of have that peace of mind that somebody else would be here if I got stuck in bed.”

Holly Holmes, 19
Spinal muscular atrophy type 2
Oklahoma City

At 18, Holly Holmes was ready to move out of her parents’ house and live on her own.

The teen, who relies on a power wheelchair and a BiPAP ventilation machine at night, wanted to rent her own apartment and hire outside assistance, but her parents were concerned about her living alone. So instead she moved to the Quail Creek Nursing and Rehabilitation Center.

Quail Creek gives Holmes the full-time assistance she needs and provides a safe environment.

Besides full-time skilled care, the facility provides meals, laundry services and help with daily chores such as cleaning. Holmes’ mother, Elaine, helps with her laundry to make sure the facility doesn’t lose anything.

Holmes likens the meals to “hospital food” and says, “They have good days and bad days.” There’s not much variety in the menu, but Holmes is used to it and looks forward to “good days.”

Nursing homes conjure up an image in which all freedom is lost. Having lived at Quail Creek for a year, Holmes finds this not to be true.

She can come and go as she pleases and can choose among scheduled activities. She participates in occupational therapy each day to work her arms and hands. Her room is furnished with a telephone, computer, television set, minirefrigerator, microwave, and of course, plenty of snacks and drinks. (For more on Holmes, see “A Checklist for the Journey”)

“It took me a while to get there, but what matters is I succeeded. I just kept my mind to it,” Holmes says. “A couple weeks before I moved out I was excited, nervous, and a little scared, but I knew it would be something that could really benefit my family and me, so that was cool.”

Most nursing homes have waiting lists, but Holmes didn’t have to wait for a room at Quail Creek because it also provides short-term rehabilitation services. Medicaid pays for Holmes’ small apartment-like room with a bathroom.

Her roommate status changes from time to time. It’s difficult for Holmes to adjust to having a roommate, especially one who’s much older.

She also had to adjust to being one of many people needing help from the staff and having to wait her turn. When Holmes lived at home, her mother cared for both her and her older brother Jason, who also has SMA.

“A lot of people do have that bad image of nursing homes because they just get people who want to make the money and don’t necessarily care about what they do,” she says. “Or if they do care about their work, there’s just not enough help to get everybody the kind of care that they truly need. They have to split their time between the residents.”

She’s done her share of waiting, Holmes says, but for the most part living at Quail Creek is working out well. The rehabilitation center gives her an opportunity to be around people of varying ages. She also enjoys visiting with the staff on the three daily eight-hour shifts.

“I feel more comfortable right now with a lot of people around me instead of just an apartment by myself.”

Being at Quail Creek also has helped Holmes learn a lot about living independently. Eventually, she wants to revisit her original plan of getting her own apartment and receiving help through hired personal assistants.

Jennifer Gerber, 28
Yelm, Wash.

Jennifer Gerber
Jennifer Gerber (left) lives in a rent-subsidized apartment, with frequent visits from her stepmother, Debby.

Jennifer Gerber uses a power chair and relies on a ventilator at night and occasionally during the day. At Killion Court Apartments, a 20-unit subsidized complex serving elderly individuals and people with disabilities, she has one of two completely accessible apartments.

Gerber’s main source of income is Supplemental Security Income (SSI), but she’s actively searching for a bookkeeping or administrative job, preferably one that will allow her to work from home.

She'd wanted to move out of her parents’ house since she was 18, but it took Gerber a few years to make it happen, and the process was long and grueling, she says. She received a list of subsidized apartments from the state’s Department of Social and Health Services and began calling apartment managers and asking questions about accessibility and funding. (In subsidized housing, a tenant’s rent is determined by a percentage of his or her income. The state pays the remaining amount.)

After finding two complexes in Yelm (she wanted to be close to her family), Gerber applied to both because of the long waiting lists. She remained on both waiting lists for a year and a half before being contacted about an opening at Killion Court Apartments.

“The whole process is a lot of research, calling around, asking questions, and a whole lot of determination and patience,” Gerber says.

Gerber receives $556 per month from SSI and pays $113 in rent, which includes water, sewage and garbage services. She gets $80 a month in food assistance from the state (determined by her income). Keeping to a tight budget, Gerber pays all her other bills such as gas and insurance for her van (someone else drives it for her), electricity, telephone, laundry and cable TV.

Besides the basics — food, shelter, entertainment —- Gerber also needs enough nursing coverage to live comfortably by herself. She’s entitled to 16 hours of nursing care daily, paid by Medicaid.

With some help from a staffing agency, Gerber has arranged for a crew of full-time, part-time and fill-in nurses to assist with medical needs, wheelchair transfers, maintaining her tracheostomy, dressing, bathing, transportation and other daily activities.

With contractures in her joints and severe weakness in her extremities, Gerber has limited movement and needs assistance transferring with a Hoyer lift. She also asks her nurses to place items within her reach.

Gerber spends several hours each day alone, and her stepmother, Debby, comes in the evenings to help her make dinner, do laundry and clean the apartment.

All apartments have pull-cords that sound an outside alarm in case of emergency. Gerber also feels safe knowing that her grandmother, Barbara Solheim, lives in the same apartment complex.

When nurses call in sick or cancel for other reasons, the agency tries to find a nurse to cover, but it’s not always possible. Gerber’s family helps out as emergency backups.

“I’ve been lucky that, for the most part, I have a reliable and dedicated staff,” she says.

Gerber recommends her living situation to anyone with similar needs.

Living alone takes some getting used to, Gerber says, for anyone with or without a disability. Gerber has learned to be patient when she drops things and has to wait for help to pick them up. This was extremely frustrating at first, but she says she’s gotten used to planning ahead or waiting for assistance.

What makes Gerber’s situation better than living with her parents? One word: independence.

“I follow my own rules,” she says. “I can decorate my place the way I like it. I can have a party if and when I want, or play music as loud as I like.”

But above and beyond these things, “Independence really makes a difference in confidence,” she says.

“For people in our situations who are having to rely on people constantly, any form of independence makes you feel whole, makes you feel like an adult, like you are actually part of that grown-up society.

“At least in this way, you are not reliant on someone else. There is some sense of pride and confidence that comes along with saying, ‘I have my own apartment.’”

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