A Checklist for the Journey

by Kathy Wechsler

You may be getting ready to graduate from high school, re-evaluating your life as an adult living with Mom and Dad, or starting over after the death of a spouse who took care of you for 25 years. For people with neuromuscular diseases, it can take a lot of effort to achieve independence.

What's Independence?

When you're independent, you're in charge of your life. You make your own decisions, handle your responsibilities, pay your own way, obtain your own care, and come and go as you please.

But for people with neuromuscular diseases, independence isn't so easily defined. It isn't all or nothing. It means different things to different people.

• Independence means living on your own, making your own decisions and learning along the way, says Chris Buhl of Sioux Falls, S.D., who has Becker muscular dystrophy. Buhl, 24, uses a power wheelchair to get around and needs some assistance to make it through the day. He's the 2004 MDA Personal Achievement Award recipient for South Dakota.

• Being independent also is about knowing who you are as a person and learning to do things you never thought you could do, says Holly Holmes, 19. Holmes has spinal muscular atrophy type 2 (SMA2), uses a power chair, and lives at Quail Creek Nursing and Rehabilitation Center in Oklahoma City.

• “Independence doesn't mean necessarily living on your own,” says Howard Ermin, an independent living specialist at the Center for Independent Living (CIL) of Southcentral Pennsylvania in Altoona. Ermin was born with spina bifida and uses a manual wheelchair.

“I lived at home with my parents until I was 24 years old, but that didn't mean I wasn't independent. The only independence I didn't have at that point was financial independence, which kept me from being able to rent my own place.”

• Independence means functioning for yourself, says Denedria Banks of Los Angeles. That may include holding down a part- or full-time job and living independently with or without a roommate. The 31-year-old, who has Charcot-Marie-Tooth disease, also sees independence as having transportation, a rich social life and hobbies of your own.

Banks is able to walk with leg braces but has limited stamina. She realizes that as her disease progresses, maintaining independence may require hiring a part-time caregiver or finding a more wheelchair-accessible apartment.

Who Needs It?

Clearly, the psychological aspects of independence go way beyond the freedom to do what you want, when you want.

“Perhaps the most important aspect is that of self-respect,” says Bob Lovering of Phoenix, a counselor with more than 40 years experience in disability-related issues.

The need for independence hits us at different points in our lives. You may be tired of living like a teenager at age 32 (see “Learning to Let Go”). Maybe it's just time for a change. And even the best family living situation can come to an end. What will happen when your parents are no longer around?

Planning ahead is extremely important when you have a progressive disease. You need to think “what if?” or you may end up in a situation for which you're not prepared.

“It's best to plan for the future and not worry so much about the immediate,” Lovering advises. “Don't sacrifice the future on the altar of the immediate. Kids and immature adults are very prone to do that.”

How Do I Get It?

	Holly Holmes, with caregiver Stan Kaseke, says independence is about knowing who you are. .

Independence is a journey, not a quick trip. It takes a “can do” attitude and a strong willingness to keep trying until you reach your goals.

You need to be outgoing and take an active role in the search to improve your life, those who've taken the journey say. You'll never know independence if you just sit around and wait for it.

In general, seven key elements enhance independence for people with disabilities:

• education
  
• employment (or financial security)
  
• transportation
  
• housing
  
• attendant care
  
• daily responsibilities
  
• knowing your rights

  These elements aren't easy to obtain. But have no fear: You can still be independent even if you can't accomplish every one. For each element you're able to check off, you become that much more independent.

  Education

  Education is key for people with and without disabilities. For those with muscle-wasting diseases, an education is a way to prepare your mind for a future that your body can handle.

  Education allows you to get better employment and, as a result, more opportunity to live independently, says Alma Almanza, an independent living specialist with the Central Coast Center for Independent Living (CCCIL) in Salinas, Calif. If college isn't your thing, consider a trade school, where you can learn such career-oriented skills as computers, fashion design or photography.

  Almanza stresses the importance of making good grades in high school. Vital to getting into the college or university of your choice, high grades also open the door to scholarships and grants to help pay for your higher education.

  Keep in mind that you're never too old to learn. Adults shouldn't be embarrassed to go back to school and get their college degrees. See “Independence Resources” to learn about programs to help students of all ages.

  “Having a degree gives me an advantage in the work world as well as giving me confidence,” says Buhl, who earned a bachelor of science degree in speech communication from Southwest Minnesota State University in Marshall, and now works at a television station.

  “It's a good stepping stone for employment. Plus, if I ever want to go back to school, I already have my bachelor's degree taken care of.”

  College also provided Buhl with his first experience of independence. Living in the dorms was a test of his ability to manage away from his parents.

  Banks says college taught her to accept her differences. She received a bachelor's degree in child development from California State University at Northridge in 1995, and later earned a master's degree in social work so she could broaden her career choices.

  “The difference, I think, between myself and someone without a disability, is that I always feel the need to prove myself,” Banks says.

  Besides helping you prepare for a career and the love of learning for its own sake, a college education can teach you to more effectively cope with the effects of disability. CILs and university services for students with disabilities can give you skills to keep you on the road to independence. Programs such as skill training, peer counseling, disability advocacy and information referral provide a road map to your destination.

  Employment

  Denedria Banks finds holding down a job is a key to her independence.

  “Employment makes people with disabilities more independent because then they have financial means,” Ermin says. Even if you're not thinking of moving out of your parents' house, having an income makes it possible to enjoy your favorite activities such as seeing a movie or going out to eat.

  Holding a job is also good for the old self-esteem.

  Banks says her job as a medical social worker at Gambro Healthcare in Inglewood, Calif., gives her a meaningful way to contribute to society. Banks also gives motivational speeches, mentors youth and runs a Web site, www.gemwithin.com.

  Banks had to reduce her workload after breaking her hip in a fall last year. Knowing that her CMT eventually may make a job change necessary, she's working toward an LCSW (licensed clinical social worker) certification, which will allow her to become a group counselor. She feels confident she'll have a secure future because the social work field is so diverse.

  	One of Chris Buhl's two jobs is at television station KSFY.

  Having a job is a way to be a part of a team, says Buhl, who works part time as a production assistant at KSFY, a Sioux Falls television station. He's also a part-time sales associate at the clothing/accessories store Hot Topic. With two such different jobs, Buhl has the chance to work with diverse people and form lasting friendships.

  Working at home is another possibility. Find the things that interest you and start a small business, or jump on the Internet marketing bandwagon.

  Not every job pays off in cash. Holmes, who lives in a nursing and rehabilitation center, occasionally writes articles for the center's newsletter. Although she doesn't get paid, she feels she's contributing. Volunteering is also a good way to build a resume.

  If you're concerned about the transition from reliance on government supports to total independence, a number of programs can help. See “Independence Resources” for more about PASS, Ticket to Work, the Work Incentives Improvement Act and others.

  Some programs can help you keep your Medicaid benefits while working, especially while you're earning an entry-level income.

  Under Social Security's Ticket to Work and Work Incentives Improvement Act of 1999, each state has the option to create a Medicaid “buy-in” program that allows working people with disabilities to earn more than regular Medicaid income/asset limits by paying a premium based on their income, says Donna Kruck of Arizona Bridge to Independent Living in Phoenix.

  Each state has a different name for the program and different income eligibility requirements; 32 states now offer a buy-in program.

  A reminder from Kruck: When you apply to your Medicaid agency, use the specific name of the program (find this out through your CIL).

  State Commissioner for the Ohio Rehabilitation Services Commission Denise Weisenborn has SMA type 2, and is trying to get Ohio to implement the buy-in program so she can start earning more money.

  Until Ohio extends Medicaid coverage to working people with disabilities, Weisenborn, an attorney, volunteers most of her work hours so she can remain eligible for a Medicaid health care program and have her caregivers paid for by the state.

  “I have the potential to make enough money to live very comfortably, but I'm not allowed to, so I end up volunteering my hours of work in order to keep my Medicaid,” said Weisenborn, 50.

  Transportation

  Buhl leaves his townhouse and heads toward his adapted van, which he drives himself.

  Almanza knows firsthand that accessible transportation — to work, to friends' homes, to wherever you want to go — is crucial to independence. She has quadriplegia and uses a power wheelchair for mobility.

  “Without accessible transportation, a lot of people with disabilities would choose to remain at home,” says Almanza, who uses paratransit systems and buses for most of her transportation in Salinas. “Unfortunately it's one of the biggest barriers for people with disabilities.”

  Find out about accessible paratransit services, buses and taxis available in your community by checking with your state or city's Department of Transportation. Another option is to buy a van and adapt it for yourself or a caregiver or friend to drive.

  If you need transportation so you can go to work, your Vocational Rehabilitation office may help you adapt a van or help pay paratransit and bus fees until your case is clos-ed successfully, meaning you've gotten a job and are satisfied with it. Other programs can get you a reduced fare card to ride the bus, Ermin notes.

  If you require special transportation to and from the job, you may claim that cost as an impairment-related work expense and deduct it from your income taxes.

  Housing

  “Remodeling for wheelchairs or other independence equipment is usually a nightmare,” says Lovering, who learned the cost of widening doorways, eliminating steps and removing carpeting when he purchased his house in Phoenix.

  “This is one reason some persons with mobility disabilities find it more practical to live with parents who have already made many or all of these modifications.”

  Start thinking about accessible housing and how you'll be able to afford it, Almanza advises. One option is government-funded low-income housing.

  The U.S. Department of Housing and Urban Development distributes money to each housing authority in the country, manages funds and determines residents' eligibility. Eligibility depends on income level, a figure determined by where you live and how many people are in your household.

  Even with the income limits, you can still work and qualify for low-income housing: As your income increases, the amount you pay for rent will increase, too.

  (For more on housing options, see “Bringing Home the Possibilities.”)

  Attendant Care

  Housing and attendant care go hand in hand for those who require assistance in order to live on their own.

  An independent living specialist at your local CIL can help you write a “help wanted” ad for a personal care attendant or personal assistant and place it in local newspapers, church bulletins or college bulletin boards.

  CILs teach you to train, manage and even fire your personal assistant when necessary. If your county doesn't have independent living services, contact your Statewide IL Council (SILC), which should be able to point you to local providers of IL services.

  Finding reliable assistant care is one thing; paying for it is a whole different story.

  To find out about your state's assistance programs, contact the Centers for Medicare and Medicaid Services. State- and federally funded programs such as California's In-Home Supportive Services (IHSS) help pay for services that can assist you with housework, meal preparation, laundry, grocery shopping, bathing and grooming. As with all state and federally funded programs, IHSS has income limits.

  (For more attendant care options, see “Bringing Home the Possibilities.”)

  Daily Responsibilities

  	Independence brings responsibility; Buhl grills his dinner and washes dishes.

  There's a lot of responsibility involved in being independent, Ermin says. Who's going to take care of your meals, finances, housework, laundry, grocery shopping, etc., day after day? You are.

  One critical responsibility is handling your own medical care. This includes monitoring your condition, making appointments, handling billing and dealing with physicians about your condition. Young adults also need to switch from pediatric to “grown-up” doctors, and teach a new doctor about themselves and their needs.

  It's critical to find a doctor who's familiar with the kinds of medical issues your disease will present in adulthood. Your MDA clinic can point you to the experts in your community.

  It's also vital to learn to advocate for your own health care if you're faced with indifferent or uninformed medical professionals. A CIL's living skills program can help you learn to handle these responsibilities.

  Knowing Your Rights

  “If there weren't advocates that really truly had the passion to advocate on behalf of people with disabilities, a lot of us would still be living like people with disabilities lived a hundred years ago,” Almanza says.

  If you aren't familiar with your rights as a citizen of the United States, it's easy for people to take advantage of you, experts say.

  Sometimes people just don't know they're violating your rights and limiting your independence: The narrow aisles in department stores probably aren't designed to keep out wheelchair and scooter users. But people can't become aware of problems until you point them out. That's why advocacy's so important to your independence.

  The National Council on Independent Living works with CILs to inform people with disabilities about their rights and ways to handle possible infringements. The U.S. Department of Justice (DOJ) publishes booklets focusing on education, employment, physical access, housing and other rights of people with disabilities. DOJ also has a free ADA Mediation Program to assist in quick and amicable resolution of local conflicts about barriers, accessibility and policies.

  You Can Do It

  Independence doesn't come easily. “You have to be persistent and you have to be knowledgeable about the resources available in your community,” Ermin says.

  “If you work at it hard enough, you'll eventually find the answers you're looking for. You might have to look long and hard, but they're out there.”