Having your child move out of your home is a rite of passage that announces to the world that he or she is ready to assume adult status. Able-bodied people usually take it for granted — you probably don’t.
Jerry Ferro, a licensed mental health counselor in Florida, knows exactly how difficult that transition can be, as he’s lived with spinal muscular atrophy (SMA) since infancy. He notes that “moving out isn’t an easy thing to do. Staying home isn’t easy. A lot depends on motivation. Why do you want to move?”
One motivation for parents is the one we rarely say out loud: We want our lives back. After decades devoted to caregiving, we love our kids like crazy, but it’s time for them to move on to new challenges, and it’s time for us to try to get back the interests and activities we had “before” and the new challenges we have on our own “bucket lists.”
But often the motivation to move comes from a sudden crisis. Perhaps parents have become too old or too disabled to continue caring for their child, or perhaps they no longer have the emotional strength to keep going on.
Long before there’s an emergency, Ferro advises developing a support system or network that includes other family members, neighbors, friends, work colleagues, church members and others.
Don’t assume that people will come forward to help in an emergency — talk with them now about what kinds of help your adult child needs and how they can fit into the picture. Someone who can’t lift your child may be brilliant at handling paperwork and bureaucracies, or helping with laundry, meals and other support.
Find local resources
In the 1960s, a group of disabled students at the University of California at Berkeley created the Physically Disabled Students Program, to ensure that all aspects of academic and social opportunities were available to students with disabilities. Formally incorporated in 1970, it later became the model for CILs — centers for independent living — around the country.
Chris Mullen at the Berkeley CIL states, “CIL works exclusively with the disabled to assist in living more independently, but we do not focus on the individual disability. We have helped hundreds of individuals (our database is actually in the thousands!) find housing, an attendant, a job, etc. As long as the service helps a disabled person live independently, we assist with it.” The Web site www.disabilityresources.org offers a smorgasbord of information and opportunities.
When you and/or your son or daughter are ready to explore options for living independently, check out the “Virtual CIL” to find one (or more) in your state. Go to http://disabilityresources.org/DRMreg.html for a state-by-state list of all sorts of programs and services that can help.
Making dreams come true
For many young adults, independent living starts when they go away to college, and frequently ends with graduation and a move home. Others are able to move into their own homes when they marry. Still others have transitioned through several stages and styles of independent living. Here are several “moving out” stories:
Jenn Malatesta, 37, has spinal muscular atrophy and lives in Norwood, Ohio. She chose college as a way of gaining independence. At 18, she received a scholarship to Wright State in Dayton, Ohio, and moved into a dorm.
The freedom was the most exciting part of moving away from home, she says. “For the first time, I was around and with my peers 24/7. I loved going to MDA summer camp each year because I craved this independence. I’d joke that going away to college was like going to summer camp for nine months. In some ways, though, it was true.”
At school, Malatesta needed a personal care attendant for about an hour in the morning and an hour-and-a-half at night. At first, she also had attendants meet her at her dorm room midday so she could take a bathroom break. But she notes, “This got to be too much of a hassle for me after awhile, so I would just drink less and only used the bathroom in the morning and at night.” That determination to build an independent life led to her current satisfying life as a wife, mother and homemaker.
Brandon Kreitz of Spokane, Wash., who was diagnosed with SMA around his first birthday, was so eager to become independent of his family that he moved out to live with his girlfriend and her family during his senior year of high school. “I know it was an early move,” he says, “but we never know how long we have to live our lives, so I decided to get a jump on life!” After his graduation from Lewis & Clark High School, he and Kassy, his fiancée, got their own apartment and were married last fall.
Kreitz was able to accomplish this level of independence despite significant weakness, and needing help getting dressed, bathing, preparing food, using the bathroom and turning over at night. Kassy took on the role of caregiver, and later started getting paid for her care through a state program, which was a big help to them financially, Kreitz notes.
Brookanne Clark, 26, of Dallas, found that the government can make independent living more difficult than the disability does.
Clark, who has SMA1, needs help with all activities of daily living. With a lot of hard work, she graduated from Texas A&M in 2004, did her student teaching, and was hired to teach second grade. She loved her job and was looking forward to a long career. The only problem was that she still needed Medicaid to help with some equipment expenses.
During her first semester of professional teaching, Clark was told by Medicaid that she either needed to quit her job and make some restitution to Medicaid or lose Medicaid and its benefits. In other words, despite doing her level best to participate in society and be productive, Clark’s choices were limited by a government that wanted her to choose between working and having the level of insurance benefits she needs to function.
Clark quit her job, and began working with a lawyer to improve health care for all Texans with disabilities. They’re in the early stages of this work, and are looking forward with hope.
In the meantime, Clark has moved back home with her mom, Olivia, but hasn’t given up on living independently. “One day she hopes to have her own place,” says Olivia. “Probably live with a friend since she can’t take care of herself.” Olivia has high hopes that her daughter’s lobbying will work. Until then, “we also — now and then — buy a lottery ticket.”
Opening New Horizons
As a parent, you may fear that your child will end up being the youngest resident of a nursing home. Many do. Spencer Brucker found something better at New Horizons in Unionville, Conn.
The story of New Horizons began in 1955 when a group of disabled people living in a chronic care hospital wanted more from their lives, says Executive Director Michael Shaw. They wanted a place where they and others could live as independently as possible and still have help onsite when they needed it.
The concept of people with disabilities creating and managing a home for themselves was groundbreaking and came with daunting challenges, including fundraising, design and even changing a Connecticut law!
After 31 long years, New Horizons opened in 1986. Most of the original residents had spinal cord injuries. Residents were — and are — expected to be mentally alert and able to handle their own affairs.
Spencer, 56, has an “undiagnosed neuromuscular disease,” and has dealt with progressive physical decline since age 13. He says that by age 30, he and his parents were “getting on each other's nerves” so he lived five years in his own apartment before moving into New Horizons.
|Author Donna Albrecht|
To learn more about the successful struggle to make New Horizons a reality, read The Story of New Horizons: How People with Severe Disabilities in a Chronic Care Hospital Worked Their Way to Independence by Polly Hincks (iUniverse, January 2001). To learn more about how it functions today, go to http://newhorizonsvillage.com.
Ferro, who has a private counseling practice in Florida, has counseled many people with disabilities who wanted to live independently. He warns that “moving shouldn’t be a reaction to parents. Although that can help motivate, it shouldn’t be the only reason.”
Ferro notes that “it’s critical to have something to do. If there’s a purpose to your life, it will be much more successful than if you watch TV all day. Without a purpose, people develop depression and a poor self image. It can lead to use of drugs and/or alcohol to escape the pain.
“So many people get involved with alcohol or drugs and that takes away their energy. That’s a real trap, because nothing will make you less independent than drugs or alcohol. It can lead to failure of your independence.”
Happy endings encouraged — but not guaranteed
As many parents already know, there’s often very real panic in families about the future.
This really hit home for me when I was speaking to a group of parents at the Lucille Packard Hospital at Stanford University. It had become quite clear that a number of parents in the room were absolutely terrified about what the future held for their adult disabled children. After the talk, one 70-ish mother came up to me and offered her son’s hand in marriage to my daughter Abby, sight unseen. She was serious, because she was quite close to not being able to take care of him anymore. I understood her desperation — I often feel it myself.
In our family, Abby, 32, who has SMA, is an only child, so there are no siblings to step up and help out when my husband and I can no longer manage. We’ve talked about it and she has a plan in place with a group of her able-bodied friends to at least make a safe transition.
A transition to what, I do not know. She would never adjust to a nursing home; she’s too active and independent (and ornery). Knowing her friends will step in is not an ideal situation, but the best we’ve been able to do.
If that falls through? As parents, we know that’s the stuff of which nightmares are made.
Donna G. Albrecht is the author of seven books including Raising a Child Who Has a Physical Disability (Wiley) and Buying a Home When You’re Single (Wiley). She and her family live in Northern California.