Over the past 25 years, I have been involved with community service for adults ...... with developmental disabilities. As a teacher, trainer, administrator, consultant, and lecturer, I have worked with direct care, supervisors, middle management, executive management, administrators, private non profit boards, and county/regional officials.
Grounded in the work of Wolf Wolfensberger's Normalization, my clients have forced me to demonstrate to them how the ideals and the service realities can go together. And in fact, as an administrator, I have been tested and challenged in the same way.
Through consultation and training these experiences can be made available to you in ways that help you as a parent, client, staff person, administrator or board member.
The most anguishing issue for adults with developmental disabilities is their opportunities "to grow up".
"Six months ago, when I attended commencement exercises at High Point, parents told me their kids were graduating “into the unknown.” They spoke of fears and uncertainties Reminiscent of the day they received the diagnosis of their children’s disabilities."**
This opportunity is greatly controlled by their parents. Their parents who in so many cases have given them a safe and loving and caring family and home life, also have the greatest difficulty in letting them have their final and most necessary "growing up" phase as an adult in the world.
It can be said that only a child's parents can understand them and give them the quality of care that they deserve. It can be further said that no residential setting can give them any better care than the better parents give their child. And often that residential care is mediocre or worse.
However, when the developmentally disabled adult becomes 18-22 years old, in order to get that "growing up" experience, they must, like the rest us, leave home for experiences and challenges away from the safety of mom and dad and hopefully in the best residential setting available.
For all the wonderful things that any parent can give any child, a parent cannot give their child: separation-independence-adulthood . It is by definition impossible for any parent of any child to do.
Especially attuned to this issue, I bring resources to those parents who want the best for their adult child.
Many parents realize that they must let go yet have dependent adults that cannot be thrown out into the world. Parents want help in providing the very best for their adult children. In the better societies (including the one we live in), children outlive their parents. So, the parents must let go at sometime. And indeed, they have a choice. They can make plans and consciously plan the transition as their adult child enters adulthood.
"Checking in with them now, I’ve learned that parents who planned early and advocated ferociously for their kids had more successes. About half of the grads are in some kind of job or program, but the services they receive are often limited, says Neal Elyuakin, High Point’s principal."**
Or, they can deny it and avoid any planning until it is forced upon them and endangers whatever is possible for a good life for their adult child.
In reality, most parents do some of each, a little avoidance and a little planning. In most cases, there is not enough commitment to planning and there is too much avoidance. The parents know it and feel it. Even though they know the language of independence, adulthood and freedom for their adult child, doing enough of the right things to allow it to happen for their adult child is just so very very very difficult.
In summary of this particular issue:
1. The transition from childhood to adulthood is a major event to the child and the parent. It is second to the parent's first realization (usually told to them by their doctor) that their infant is very physically handicapped and developmentally disabled.
2. That the parent's major role is as an advocate and by implication that by living at home as an adult the parent cannot be as good an advocate as the adult child who lives elsewhere.
3. That all of this, for so many years with no let up is very hard to do in the very best of circumstances of quality community alternatives for residences and day programs.
** The two quotes above were taken from the Wall Street Journal article by Jeffrey Zaslow in its full text below. He captured the parent's sentiments better than I could. Next is his article from his Moving On column in the Wall Street Journal--
Moving On/by Jeffrey Zaslow
Wall Street Journal
December or January 2005/6
Ms. Stautz can’t walk or talk, but she misses her old school, says her mother, Janice. Every day at High Point, she socialized with classmates and got encouragement from teachers. Now, she spends mornings in bed, “watching lights and colors on TV,” says Janice. Later, her wheelchair is pushed into the living room, where she is switched into a recliner. Ms. Stautz is on a waiting list for a county day-care program, but her family doesn’t know when or if she’ll get in.
“I try to keep her stimulated, but there’s only so much I can do,” says Janice, who recently bought Holly a puppy for company.
Six months ago, when I attended commencement exercises at High Point, parents told me their kids were graduating “into the unknown.” They spoke of fears and uncertainties Reminiscent of the day they received the diagnosis of their children’s disabilities.
Checking in with them now, I’ve learned that parents who planned early and advocated ferociously for their kids had more successes. About half of the grads are in some kind of job or program, but the services they receive are often limited, says Neal Elyuakin, High Point’s principal.
In the U.S. last spring, about 90,000 families had disabled loved ones age out of public education. (In most states, they “graduate” at age 21.) Ms. Stautz’s story is a common one. Because community programs are limited, nonexistent or best by budget cuts, few adults with disabilities received care that matches what they had in school. To find meaningful activities and jobs for them, their parents must be relentless, creative and unwilling to accept the status quo.
In Winnetka, Ill. Kirk Hartemayer, 20, is developmentally disabled and will “age out” at 21. He is part of a generation that by law got “an incredible start” educationally, from specialized preschools to innovate mainstreaming programs, says his mother, Sue. “He has been educated to the best of his ability so that he can sit on the couch in the basement for the next 70 years.” Ms. Hartemayer and her husband have considered moving to Michigan, where the graduation age is later, so her son will receive services until age 26.
The Hartemayers have visited adult programs in Illinois, but waiting lists are 100 or 200 people long. They were told that no one has been accepted from these lists in five years or so. In the U.S., about 80,000 adults with disabilities are on waiting lists for government-funded services.
That’s why parents must be proactive. In West Chicago, Ill., three families pooled resources this year and bought a greenhouse business, so their aged-out loved one will have a place to work and interact. The non-profit business, called We Grow Dreams, how has 58 young adults with disabilities working there.
“We wanted a business that was low-tech, hands-on and labor-intensive,” says Donna Jarmusz, one of the founders, whose son Justin, 22, has autism and mild mental retardation. Her group paid $700,000 for the greenhouse, and their monthly mortgage is about $4,000. After training, workers earn minimum wage.
“It’s excellent when I see things grow,” says Mr. Jarmusz. “I like working hard and taking out the garbage because I am a strong person.” He says he hopes to earn “bunches of money to open We Grow Dreams in other cities.”
One High Point grad, Adelia King, has a neurological disorder and can’t walk or talk. To learn the social-service system and make contacts, her mother, Linda, served on a local mental-health agency board for 11 years. She was able to get her daughter into a day program. “They’re watching her,” says Mrs. King, “but there’s no real teaching.”
Adelia King has gone from a school environment, with an array of services such as speech therapy, to a facility focused on basic care. Seeing all the senior-citizen clients, Mrs. King says, it’s daunting and depressing to think that this sort of program could be her daughter’s only option for decades to come.
Andrew Cobb, who has ataxic cerebral palsy, was one of High Point’s highest-functioning grads. He found a job sweeping up at a supermarket three days a week. When he’s not working, he loves watching wrestling on TV.
“I miss my teachers sometimes,” Mr. Cobb says, though he calls them to talk through issues in his life. His mother, Jane misses networking at school events, when parents would stand around sharing war stories and advice.
Jo Ann Simons has navigated the aging out transition with her 26 year old son, and now counsels other parents. She runs an agency for those with disabilities in Reading, Mass. Among her tips: “Don’t let anyone tell you that your children can’t learn more or read better than they do today. Learning never ends.”
She also encourages parents to let adult children express how they’d like to chart the rest of their lives. Many are yearning for more independence. “If you don’t teach your child to cross the street, he will never know what’s on the other side,” says Ms. Simons, “Neither will you.”
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