Tuesday, May 4, 2010

Alabama family adopts woman with CP to get her out of nursing home

From The Daily Times in Florence, Ala.:


If Haylee Cain were telling you her life's story, it would begin April 29.

The 21-year-old said she would always remember it as the day she moved out of the nursing home and into the lives of Donna and Judson Emens, of Tuscumbia. (Cain is pictured with her new family.)

"I'm just so excited," she said. "I said I wouldn't cry, but I might."

Because she suffers from cerebral palsy and because her grandfather, James Thomas, was no longer able to care for her, Haylee was forced to live in a nursing home. No state agency exists to care for individuals such as Haylee who suffer from physical, rather than intellectual, disabilities and who are 21 or older.

The Emenses read about Haylee's plight in the TimesDaily earlier this month.

"Judson brought the paper to me, and he showed me the photo but he covered up her name," Donna Emens said. "I knew right away it was Haylee. I couldn't believe there she was and that she was living in a nursing home. Something had to be done."

Donna and her husband had developed a close relationship with Haylee 17 years ago, when Haylee was 5 and enrolled in the Colbert County Head Start program.

"I would bring her home with me after school sometimes, and she'd sometimes spend the weekends with us," Donna said.

Time and distance soon separated them, however, and they eventually lost touch. Seeing Haylee's face brought back the wonderful memories of the time they shared, Donna said.

"(Judson) and I went to see her at the nursing home, and it was a wonderful visit," Donna said. "But we knew we couldn't leave her there. On the way home, we were so quiet. Both of us were thinking the same thing: We had to do more than just see Haylee every now and then. We had to bring her home."

"I wouldn't be able to look at myself in a mirror again if I left her there in that bed of depression," Judson Emens said. "She is such an inspiration to us. She is truly a special person, and we're blessed to be able to do it."

With little to go on other than their desire to give Haylee a new home, Donna said money, time or the amount of care Haylee might need weren't even considered in their decision. Instead, the couple said their plan is to add special equipment as Haylee needs it.

"We brought her home for a trial run last weekend, and we realized we would be able to do this," Donna said. "Judson could pick her up and move her around. We gave her a bath and prepared a meal for her. There wasn't an obstacle we couldn't overcome."

Donna also retired a year early from her job as a nurse at the Northwest-Alabama Cancer Center in order to stay home with Haylee. But being a nurse was not the only training Donna has for her role as Haylee's caregiver. Donna's brother had Down syndrome.

"He taught me and my parents so much," she said. "He wanted to be independent, and we helped him get there. I believe we can do that for Haylee."

Were it not for the Emens, it's likely Haylee could have lived out her life in the nursing home. Even after just two months of that kind of life, Haylee said she suffered from depression and a sense of hopelessness.

Too often, she'd been promised a new, better life, and just as often, those hopes were dashed.

"I'd tell my story and tell people how hard it was, and they'd listen and make these promises, but I'd never hear from them again," Haylee said.

Karen Coffey, who runs the state's independent living program for the Alabama Department of Rehabilitation Services in Montgomery, didn't offer hope that the state would have come to Haylee's rescue.

She blames the lack of programming and services for people such as Haylee on a lack of money at the state and federal levels.

"This is not a new problem, and it's one we've been trying to address for years," she said. "A lot of the problem today goes back to the economic crisis. The Legislature doesn't have the money to provide us with additional funds that would allow us to offer more."

Despite the standstill, Coffey said progress has been made in the 12 years she's been with the department.

"At least they're aware of the problem," she said. "But, at the end of the day, the pie is only so big and there are only a certain number of pieces to go around."

One of the reasons there is nothing available for Haylee is that, to qualify for a spot in a group home, her IQ would have to be less than 70, which would place her in the intellectually disabled category.

Hannah Turney Zapata operates Restore Care, in Toney, which caters to those like Haylee. In order to get in, though, an IQ test must prove the need.

"Anytime you have someone who needs care 24 hours a day, regardless of their intellect, it's going to be difficult," Zapata said. "It's amazing that she's going to be part of a family now. What's not so amazing is to not have options. I applaud this family, and it's awesome they've stepped up to do this. But, at some point, whether that's today or five years from now, there may come a time when they can't provide the care she needs."

Zapata suggested getting Haylee tested and get her in the system so that, if there ever is a need for services in the future, those needs would have been documented.

For now, the Emens said they plan to take it day by day.

Both Judson and Donna are in their 50s, and, although they have no children of their own, they are in the process of adopting 3-year-old Nadia. The goal is to also adopt Haylee.

"We've talked so much about this, and our extended family are involved in it, so, we hope that, no matter what happens to us, this will be Haylee's home and family forever," Judson said.

Haylee, too, is excited about the prospect of adoption.

"I'm ready to be Haylee Lynn Emens," she said.

In the meantime, she's already fitting in to her surroundings. In addition to a new home, parents and a little sister, Haylee also has three dogs, a pet rabbit and a bird to keep her company.

"I always wanted a dog named Rudy, and they have one with that name," she said.

While there were a few tears shed at her homecoming, they were happy tears, especially those from Donna.

"Everything we have is a cast-off," she said. "Our animals came from those who couldn't keep them anymore. Most of what we have is because someone else didn't want it anymore. I feel like this is what I'm here to do; I'm here to care for those things no one else wanted. That's how I know she'll always be loved with us."

There's no question the Emens will live happily ever after, but this is not the end, Haylee said.

"It's my beginning."