When Children Become Caregivers

Jordan wakes at 6 a.m. She helps her mother, who is recovering from surgery for breast cancer, into the bath. Jordan has it all timed. She gulps down breakfast as her mother bathes, and returns to help her out of the tub. "I'll make sure her bandages are clean and didn't get too wet," Jordan says. "And if they did get too wet, I change them."

Her mother is disabled from painful fibromyalgia, so Jordan takes her to her room, where her mother can dress herself. That gives Jordan a chance to get ready for school and walk the dog before her mother, slowly moving into the car, drives her to school.In the evening, Jordan, who asked to be identified by first name only, tends to the family's animals. She helps her mother into bed and wraps a thermal blanket around her. Finally, she has a chance to eat dinner, do homework and wind down before going to sleep. Bedtime can be past midnight for the Florida ninth-grader. It's a long day for a 14-year-old.
About 1.4 million children between ages 8 and 18 are caregivers nationwide, according to the American Association of Caregiving Youth. Evenly divided between girls and boys, about a third are between 8 and 11, and nearly 40 percent are between 12 and 15. Most often, the family member is a parent or grandparent, with a condition such as Alzheimer's disease or dementia; heart, lung or kidney disease; arthritis or diabetes.

In N.Y., 'Families Cannot Be Caregivers Forever Campaign' Seeks Funding

Althea Penepent, right with her
daughter-in-law Jeanne and daughter Valerie

BYRON, N.Y. – Althea Penepent often wonders (and worries) what will become of her daughter Valerie after she’s gone. So, Althea has joined a growing number of families across New York State advocating for expanded services for people with intellectual and other developmental disabilities. The “Families Cannot Be Caregivers Forever Campaign” calls current funding in the New York State Budget completely inadequate to meet the needs of these New Yorkers, many living at home with aging parents.

Valerie is the seventh and youngest child of Althea and Richard Penepent, born Feb. 2, 1977. Althea shares that her pregnancy and delivery with Valerie were the same as her first six children. She was blindsided when her doctor came into her hospital room after Valerie was born and coldly stated, “Women over 40 shouldn’t have a child because she’s mongoloid,” then turned on his heel and left. A nurse’s aide called Richard Penepent, plowing snow in the aftermath of the Blizzard of ’77, to come talk to his wife.

Aging Parents Fear NYS Policy Changes

UTICA, N.Y. -- Who's going to take care of our children when we die?
That's what a group of aging parents whose children have developmental disabilities is asking the state in the face of policy changes they believe will jeopardize those with severe disabilities.
Particularly at issue is the state's new policy on admissions to certified group homes, which provide around-the-clock supervision.

Aging Parents Fear the Future

Jessica Funkhouser’s specialty is putting together small clamps that attach conduits to the wall, but she has big dreams. At 28, she likes dragons and dinosaurs, heavy metal music and history. She wants to be a writer.

Tom Funkhouser and his wife,
Patti, right, with their daughters
Lori, 24, in pink, and Jessica, 28.

At Pride Industries’ Auburn workshop in California — where her father, 61-year-old Tom Funkhouser, a Navy veteran and Hewlett Packard retiree, works as a production trainer across the floor from Jessica’s work table — she puts on her turquoise earphones and deals with the clamps.“I usually just do clamp, clamp, clamp," she said.But she’s working, and she likes that.When she was born with a rare genetic disorder causing developmental disabilities and physical challenges, doctors told Tom and Patti Funkhouser that their tiny, dark-haired daughter would never walk or talk. She probably wouldn’t even survive childhood, doctors said.

Legislation Planned to Halt Closing of Two New Jersey Developmental Centers

WOODBRIDGE, N.J. — State Sen. Joseph Vitale, D-19th District, plans to introduce legislation next week that would reverse the binding aspect of a recommendation made by a task force last summer to close two of the state’s developmental centers, including the one here.

A similar bill is planned in the Assembly, and if approved could lead to a more negotiated discussion about the future of the development centers that house some of the state’s most profoundly developmentally disabled residents.

Funding Challenges Familes with Adult Children

Neil Stevenson and his son, Niles,
at home.

GEORGETOWN, Del. -- Neil Stevenson's son is 33 years old, yet he still lives at home. That's because he has nowhere else to go.
Stevenson calls his son, Niles, a "forever child." He's intellectually disabled, but because of a seizure condition, it's hard to find adequate medical services to supervise him. And Niles doesn't qualify for group housing -- that is, unless Stevenson and his wife either abandon him or die.

Adults Facing Challenge to Find Work, Home

ST. LOUIS -- Sam Lyss is an ideal employee.

Sam Lyss at his volunteer
job in a library.

He never misses a day at work, has an eye for detail, loves what he does and is easy to train.
“He’s a whiz at mailings,” said his mother, Jane. “If you lay it out for him and show him one time, he watches you do it once and then just turns around and starts working.”
Then there’s his work ethic.
If you give him too much work, he actually won’t leave,” she said. “They have to take half of it and hide it.”

At Last, a Home of Their Own

One of the few times I will give a shout out to our organization. This group home has been in the works for about a decade. I know the individuals who will be moving in and their families. It's so important and I can't wait to join them tomorrow for moving day.

BROOKLYN, N.Y. -- Every parent has mixed emotions about letting their baby leave home - but these Brooklyn moms and dads are feeling it big time.
With bittersweet joy, the parents will watch their six disabled adult children move into a home of their own in Midwood on Tuesday.
“It’s difficult for me to deal with the transition but I’m happy he will be living with people that he knows,” said Park Slope parent Ruth Ford whose son Maurice, 31, is among the six adults with Down Syndrome or Asperger’s Syndrome who will move into the two-story newly-renovated house on E. 52d St.
“They love each other and they care for each other,” said Ford.

Program Helps Plan as Children Age

Mary Lou and Jerry Wilhelm are in their late 70s and in fairly good health, but they are far from empty nesters free to roam whenever they please.
Most mornings, Mrs. Wilhelm helps their 52-year-old mentally disabled son, Todd, get ready for the day at Lott Industries Inc. Then the Monclova Township couple must be on hand in the afternoon before Todd is transported home from the workshop, where he mostly socializes.
Yet the Wilhelms enjoy Todd and aren’t ready to place their middle child in a Sunshine Communities Inc. family care home — where he has been on the waiting list for 10 years. They just are in no rush to make such a heart-wrenching move.

Adults Outliving Aging Parents: 'A Demographic Time Bomb'

BOULDER, Colo -- Slick stood patiently in a Medicine Horse stall, letting the brush glide over his haunches, the motion at once calming the animal and producing a smile of pure boyish bliss on the 50-year-old face of the man wordlessly stroking him.
More than 40 years ago, that man, Richard Chestor, was one of the first children diagnosed in Colorado with autism.
As an infant, he stiffened when held. He was so repulsed by human contact that even being fed drove him to fits, said his mother, Geri.
He never spoke more than a few dozen words, each painstakingly taught by his mother.
It took years, thousands of dollars and dozens of doctors before someone put a name to what was wrong with Geri Chestor's little boy.
That diagnosis — autism — was seldom heard back then.