|
It took Kelly Collins months and more than 20 phone calls to find summer day care for her teenager, Kiersten.
Kiersten loves to play with her friends, but 'needs just
'I know she's not the only one' who needs care during the summer, Kelly Collins said. In fact, agency directors say the Fredericksburg area lacks day care for teens with disabilities.
Kelly and Kiersten Collins share a deep bond, and Kelly wants quality care for her daughter, who has disabilities. |
BY AMY FLOWERS UMBLE
After a week of riding horses, swimming and hanging out with friends last summer, Kiersten Collins begged to stay for a second week of camp.
Her mom could afford only one week.
This year, Kiersten, a Fredericksburg resident, will go to two weeks of summer camp. That leaves 10 weeks of day care for her mom to plan.
Kelly Collins has made more than 20 phone calls to fill those weeks.
She is just one mom of hundreds who desperately call the disAbility Resource Center, the Spotsylvania County Parent Resource Center, the Arc of the Rappahannock and the Childcare Network to find day care for a disabled child.
At 16, Kiersten has the appearance of a young woman. But at times she displays the naivete of a kindergartner. The combination symbolizes the dilemma Collins faces.
Kiersten is, technically, too old for day care--most centers stop watching kids older than 12.
But Kiersten barely reads, trusts nearly everyone and can't remember if she's taken her seizure-prevention pills.
She has a seizure disorder, cysts on her brain and mild mental retardation.
She can't spend all day by herself.
A single mom, Collins can't quit work for the summer.
For years, Kiersten spent most of the summer with her grandmother in Michigan. But her grandmother died last fall.
As soon as spring arrived, Collins started calling area day-care centers, disability advocacy groups and the department of social services.
"I felt like I kept getting doors slammed in my face," she said. "It was just stressful, and life is already stressful enough."
Parents such as Kelly Collins all have the same need: someone to watch their disabled children.
All get the same limited options: sleep-away camps costing about $700 per week or finding a relative or neighbor.
"We can't give them a decent answer," said Jan Griffin, executive director of the Arc of the Rappahannock. "This is a very bad area, for the parents and for us, because we would love to be able to provide that day care. We know they need it."
In Charlottesville and Prince William County, for example, ARC chapters offer day care.
Parents who have Medicaid waivers for their children have more options, Griffin said. With a waiver, Medicaid pays for a companion to take care of the person with a disability.
Kiersten is one of more than 4,000 Virginians on the waiting list for mental retardation waivers.
Collins estimates it could be five years before Kiersten gets a waiver. She hopes it comes before the teen leaves high school (special education students can remain in school until age 21).
But her wait could be much longer. The waiver lists are not first-come, first-served but are based on need. Nearly 2,000 Virginians wait on the urgent list.
After 20 calls, Collins found a temporary option for Kiersten, who will attend a local summer day camp with children a few years younger.
"I've already started thinking: 'What am I going to do next year?'" Collins said.
She'd love to have a reliable summer day-care option for Kiersten. And, while she's dreaming, a place to send her for after-school care, too.
Now during the school year, Kiersten comes home about an hour before Collins. She goes inside their Fredericksburg apartment, fixes a snack and plays in her room or on the computer she shares with her mom.
Icons direct her to her favorite Web sites: Noggin, Disney Channel and PBS Kids.
Ideally, Collins said, Kiersten wouldn't spend any time alone. But she doesn't have a better option.
And when Collins takes Kiersten to Special Olympics swim lessons, she meets families in the same situation.
There, the parents get together and talk about the challenges of raising children with disabilities.
More often than not, the lack of day care comes up.
Fellow teammate Matthew Doyle is 19 and has Down syndrome.
This summer, his parents will leave him alone for the first time ever while they're at work.
"In a lot of ways, I'm lucky," said his dad, Tim Doyle. "Matthew is higher functioning than some, and I certainly feel the pain of those who would be hesitant to take that step. It is very scary, but you know there are not a lot of options out there."
Matthew's older sister watched him in the summer and during her breaks from college. But she graduated and now works year-round.
Knowing this summer would come and their options would be limited, the Doyles began training Matthew to spend time on his own.
At first, Doyle told Matthew he'd be home alone, but the nervous dad stuck close to the homefront.
"Even when he is home alone during the day, I'm not going to lie: I usually go home to check on him," Doyle said.
He and Collins both fantasize about a local place where parents could drop off their children and adults with disabilities, a facility that could be both safe and affordable.
"Yeah, Kiersten's taken care of for this year, but what about next year?" Collins asked. "What about all of the other kids out there who need help?"
Amy Flowers Umble: 540/735-1973
Email: aumble@freelancestar.com
| For the most part, a parent's best option for day care of a disabled child is a home-based center, said Regina Maloney, director of the Childcare Network. Most day-care centers are licensed for children up to age 12, but home-based day-care centers have more leeway.
And, lately, more and more have training for dealing with disabilities. The network offers an annual child-care training workshop, and the sessions on disabilities have proven popular, she said. This year, the network had "I suspect that people have become more comfortable with disabilities," Maloney said. "And maybe that's because they've had training. It's not the frightening unknown." |
|
The Arc of the Rappahannock: 540/899-3789 The Childcare Network: 540/373-3275 The disAbility Resource Center: 540/373-2559 The Parent Resource Center of Spotsylvania County: 540/582-7583, ext. 5 |
