FOR CAREGIVERS OF SOME DISABLED, CLOCK TICKING.

Byline: Darlene Gavron Stevens Chicago Tribune 

Of Dorothy Dooley's six children, Ray was the ``different'' one.

He did not walk until he was nearly 3 and never was able to learn more than a dozen words.

Dooley assumed that she would always take care of her son, who at 37 still has a childlike smile, earnestly believes in Santa Claus and is nicknamed the ``Gentle Giant.''

But in her 60s, when a doctor diagnosed her with a degenerative illness - and predicted that she would either be dead or disabled in six months - Dooley realized that she had to answer a question she had been putting off since her husband died 16 years earlier: ``Who will take care of Ray?''

A similar worry faced Lorraine Phifer, 67, a Chicago mother of two disabled adults, and Ruth Sheinin of Evanston, Ill., only 58 years old but already making long-term plans for her mentally disabled adult son.

The question eventually will grip every parent in the growing population of what researchers call ``two-generation elderly families,'' in which aging parents are caring for their adult disabled children. Because of the baby boom and medical advances, experts predict that the number of people age 60 and older with developmental disabilities such as cerebral palsy and autism will double to 1.07 million by the year 2030.

Some 80 percent live with a relative now, but where will the adult children live when their caregivers die - and who will pay for the care?

The state safety net is sagging: Nationwide, an estimated 61,000 people with developmental disabilities are on waiting lists for residential services.

``If anyone who has a (disabled) child expects the state to come up with a residential home, they'll be out of luck,'' Phifer said. ``Sometimes it's a matter of putting someone somewhere because they have a vacant bed, and that's a heck of a solution.''

National attention

The problem has caught the attention of the National Conference of State Legislatures, which last year urged states to develop long-term care policies for the growing population. The Denver-based conference listed a number of creative initiatives, including Homes of Your Own in New Hampshire, a private, nonprofit program that helps less severely disabled adults purchase their own homes.

Decades ago, Phifer and other parents were urged to ``put their children away'' from birth. But with a current annual price tag of $75,000 per person for the state, it became clear that state institutions could not be the only answer, nor did parents want to give up all contact with their disabled children.

``Dorothy (Dooley) and I are of the generation that thought, you brought this child into the world, you take care of him,'' said Phifer, the mother of six.

Now, several states stress in-home support services and community-based homes that require less - and less expensive - staff supervision but more parental involvement.

But the current approach depends on relatives willing and able to hold up their end of the job, whether it is staying at home or making day-to-day decisions about an adult child's care at community-based homes.

Too often, parents wait until it is too late to come up with contingency plans.

``The whole process of letting go is so difficult that it can be overwhelming for parents to even think about,'' said Linda Preston, a University of Illinois at Chicago researcher and herself the mother of a 12-year-old boy with Down syndrome.

``What do you do when your child has never been away from you, never even went to Boy Scouts?'' said Preston, who works for the Aging Studies program at UIC's Institute on Disability and Human Development. ``You never learn to let go.''

The result: crisis placement, in which the state discovers a disabled adult child after a parent dies or becomes too sick to be a caregiver anymore.

The emotional and practical aspects of the problem were the focus of a January conference at UIC, ``Aging With Mental Retardation.'' The conference brought together parents, people with disabilities and support agencies to discuss preparing for the future and what parents need to help them make decisions.

It was at a family workshop that Dooley and Phifer shared the pros and cons of their own solutions.

Dooley said residential care was her only option.

``My kids all work, one daughter's a nurse and one lives in Memphis,'' she said. ``It wasn't feasible to even feel I could ask them.''

Dooley felt lucky to find a vacancy at a residential home run by Oak/Leyden Developmental Services less than a mile from her own house in Berwyn.

A painful transition

Still, she remembered crying in the car with her daughter the first day they left Ray at the home.

``It was three weeks of pure hell,'' said Dooley, who walks with a cane now, but whose health has fared better than doctors predicted. ``He had one huge day of tantrums, and I thought, am I doing the right thing?

``Now he's fine. He tells me it's his house. He would rather be home with me and I would rather him be home with me, but it's not possible anymore. Most of the time, it's working out.''

Phifer said she always planned on having her son Bill, born with cerebral palsy 40 years ago, live in her home the rest of his life.

After her husband died a year ago, Phifer was overjoyed when her 44-year-old son, Frank, who lived in California with his wife, volunteered to move back and take over Bill's care.

``My situation now is just how I want it,'' Phifer said.

The Phifers' bungalow on Chicago's Southwest Side has been customized for Bill, who requires 24-hour care and is unable to move himself out of his wheelchair. Walls were knocked out, doorways widened, and the state Department of Rehabilitation Services paid for a special lift that transports Bill from his bed to the specially heated tub in an adjacent bathroom.

Phifer's daughter-in-law Mindy, 33, said she did not hesitate to move in because ``I look at Bill as if he was my own kid. We have no kids, and I think in a way that's why it happened.''