Like many working parents, Randi Ledwell has tried -- and failed -- to find day care for her two children. But unlike most parents, Ledwell is not particularly surprised by the firm "no's" she's gotten along the way.
Ledwell's son Phillip, 16, is hearing impaired and her daughter Ellaree, 6, has several handicaps as well as cardiac problems. "That's very frightening for a day-care center with 25 to 30 kids. For a child to turn blue on you, that doesn't fit into a regular day," says Ledwell, who lives in the District.
All parents are faced with hard choices when trying to find affordable, quality child care. But parents of handicapped children have even fewer alternatives and many have come up against so many brick walls they don't realize they have any choices.
"The greater the disability, the greater the problem in finding appropriate child care," says Bobbi Block, executive director of the Washington Child Development Council. A child with a mild learning disability, for example, can often be mainstreamed into a regular child-care program, but children with physical handicaps may need ramps; children with hearing impairments may need teachers who know sign language, and mentally retarded children need specialists trained to work with them.
Emotionally disturbed children are very hard to place in child care, Block says. "Even if they get into a program, most programs don't have the ability to handle a child who goes around hitting other children with blocks."
Indeed, parents of handicapped children face a double-edged sword. Even if they find places willing to take their children, they must ensure the facilities are accessible and that caretakers are properly trained.
"We know there is a need out there. People have been crying out for this," says Barbara Dykes, executive director of the Child Care Connection, an agency set up to connect parents to child care in Montgomery County. Taking a stab at the problem, several Montgomery County agencies have embarked on a training program designed to increase the number of providers who can serve handicapped children.
The agencies hope to convince providers that caring for handicapped children will enhance their overall program. "They have to address the fears of other parents who are afraid their children will receive less care," says Dykes. "And they need to be reassured that a handicap is not catching."
The most difficult type of child care for any parent to find is for infants, notes Jane Diao, coordinator of Family Friends, a program housed at Catholic University that provides "grandparents" to handicapped children.
"Many mothers are forced to quit work altogether because they can't find anybody to care for their child," says Diao, a social worker.
Diao's is among several programs in the area that can ease the pressure on families with handicapped children, while not substituting for full-time child care. Her volunteer "grandparents," all 55 or older, are matched with handicapped children age 12 or younger. The volunteers spend a minimum of three hours, one to three times a week, with their "grandchildren," playing games, helping with homework or going on outings with the whole family.
Learning of such a program in Fairfax County came in the nick of time for Eva Lewis of Reston, who was "in desperate need of care" for her daughter Michelle, 17, who has Down's syndrome. After recent surgery, Michelle was on a low-protein diet and had an incision that needed to be cleaned twice a day. Lewis, who works full time, couldn't leave Michelle in the hospital, nor could she leave her at home because Michelle continually pulled at the incisions and broke her diet.
The Fairfax County program, called CAPS, found Lewis a former special education teacher who could take Michelle into her home for a week until the crisis passed.
The CAPS program, which also is available to residents of Arlington, Falls Church and Fairfax City, normally serves a more modest purpose. "What we are aiming for is to allow the family a break from their routine care," says coordinator Susan Messingheimer. "We provide them the chance for a night out, a weekend away."
Messingheimer stresses that programs such as hers are "not the be-all and end-all. I would prefer they have as extensive a support system as possible, and use us as part of that support system."
A key part of the support system for parents of school-aged handicapped children are before- and after-school programs. While many working parents are able to find sitters to watch their children after school, parents of handicapped children often don't have that option.
The Fairfax County School Aged Child Care (SACC) program has been a "godsend" for Janet Pawlukiewicz, whose two children have a rare genetic disorder that causes degenerative nerve damage. "I used to be at home alone with my kids. The neighborhood kids don't play with them," said Pawlukiewicz. "It can be devastating."
In the SACC program, run out of 64 elementary schools in the county, handicapped children can play on equipment specially designed for them, with playmates who don't ignore them. Anna, 10, and Stefan, 12, are "very sociable, lovable children," Pawlukiewicz says. Enrolling them in the SACC program just as she went back to work full-time has made her family life "very close to normal," she notes.
Having handicapped children "can be a tremendous strain on the family," Pawlukiewicz points out. When one parent has to stop working, the family's income is slashed, hindering "your ability to pay for other services," she says.
And while most programs offer sliding fee scales for low-income parents, anyone above those limits usually must pay the entire fee out of family incomes already stretched to the limit.
Meanwhile, child-care providers also struggle with ever-increasing costs that keep them from even alloting spaces to handicapped children, notes Marcia Sprinkle, director of the Child Care Technical Assistance Program at Montgomery College.
"Child care is a very low profit margin business if you do it well. There is a point where you have to decide whether to pay your staff an extra dollar an hour or put in a ramp," Sprinkle says. "Ideally, you ought to be able to do both."
That ideal got a boost when Congress last year required states to guarantee handicapped preschoolers the same right to an education that school-age handicapped children have enjoyed for the past decade. The legislation allows for grants of up to $50 million for programs serving handicapped infants and toddlers.
While not child-care legislation, the measure signals the growing political interest in the needs of handicapped children and their families. And such interest is long overdue, in Eva Lewis' view. "We cannot throw our handicapped children away," she says. "They need care and it's not easy to get help."
Roberta Weiner is a Washington-area writer and coauthor of "From Birth to Five: Serving the Youngest Handicapped Children."