Parents with developmentally disabled children fight new regulations

by Anna Meiler from News Channel 2 WKTV Utica:

UTICA, N.Y. (WKTV) -- For many parents, their kids grow up, leave home and start their own lives. But, for parents with developmentally disabled children, their job never ends.

New regulations are forcing aging moms and dads to ask a painful question. Patricia Vilello wonders what will happen to her 38-year-old son with Down Syndrome if she isn't there to care for him.

"As a parent it causes a lot of sleepless nights," said Vilello.

Tommy used to be on a residential placement list through the ARC, but the state created a priority list six months ago that overrides it, which means Tommy could wait longer for a group home.

"The state does not want to open any more certified group homes. They're telling the parents to be creative, have your family and friends involved with taking care of them after we're gone. It's a 24/7 job. People aren't going to turn their lives upside down," said Villelo.

Cuts are also threatening structural workshops that Tommy attends three days a week at the ARC.

"It gives him a job, a place to go every day, mingle with peers, earn some money of his own. Everyone needs that to feel worthy," said Villelo.

a place that four women with disabilities can call their home

by Phil Garber from the Mount Olive Chronicle:

MOUNT OLIVE TWP.  – Four women with developmentally disabilites from the area will soon have a new home thanks to the parents of a young woman with Down syndrome and a statewide advocacy organization.

And while the new home is no doubt a God-send to the four women, an estimated 8,000 other people with disabilities who cannot live independently remain on a waiting list for group housing that is expected to last for another 15 years.

The newest group home in Harmony Township is under the auspices of Advancing Opportunities, formerly known as Cerebral Palsy of New Jersey, with its northern office in Budd Lake.  It is the organization’s sixth group home in the region, serving  41 residents. The first home opened in Randolph  in  August 2002 while others have opened in Roxbury, Parsippany, Emerson and Demarest.

The latest home was named in honor of Melissa Gentle, a 37-year-old woman with Down syndrome.  An open house to celebrate the completion of the home was held on Tuesday, Oct. 22.

Valerie Weber, residential coordinator at the Advancing Opportunities Budd Lake office, said the opening comes four years after Gentle’s parents first began seeking support for a new group home for their daughter.

The residents range in age from 28 to 60 and have varying degrees of disabilities, though none require constant one to  one support.

Jenny Hatch, woman with Down syndrome, can live with friends

from USA Today:
 A 29-year-old Virginia woman with Down syndrome has prevailed over her parents in a guardianship case that allows her to live with her friends instead of in a group home.Margaret Jean "Jenny" Hatch has been fighting for nearly a year for the right to move in with friends, couple Jim Talbert and Kelly Morris, who employed her at their thrift shop.
Hatch's mother, Julia Ross, and stepfather, Richard Ross, filed for guardianship against her wishes. The Rosses argue Hatch needs the support and safety of a group home.
In their request for guardianship, Hatch's mother and stepfather asked for the right to decide where she lives, what medical treatment she receives and who she can see. They believed the group home setting offered the safest environment, The Washington Post reports.
On Friday, Newport News, Va., Circuit Judge David Pugh ruled that Hatch is incapable of being independent and requires a legal guardian for her care, but that he must consider her wishes regarding whom her guardian should be.
The judge gave Talbert and Morris custody of Hatch for the next year, a victory for disability advocates.
After the hearing, an elated Hatch called Talbert and Morris her "family" and said it was great to be going "home" with them, the Daily Press in Hampton Roads, Va., reports.
During court proceedings, Hatch sat on the opposite side of the room from her parents, next to Talbert and Morris. Behind Hatch sat more than a dozen supporters from the Hampton Roads area, several with the words "Justice for Jenny" written on T-shirts and bracelets, The Washington Post reports.
Facebook group Justice for Jenny has more than 3,500 likes.
Susan Mizner, disability counsel for the American Civil Liberties Union, said, "This decision is a big step in the right direction. ... Guardianship raises grave concerns because it strips people of their fundamental right to live with independence, freedom and dignity. Disability is no excuse to deprive someone of her basic civil liberties, and we are thrilled that Jenny will get some control of her life back."
Contributing: The Associated Press
Follow reporter Natalie DiBlasio on Twitter at @ndiblasio.

Jenny Hatch gets new attorney

from WAVY 10:
Jenny Hatch, a young woman with Down Syndrome, has gotten a new attorney in hopes of moving out of a group home.
Hatch, 28, has been in and out of courts for months. Her mother fought to keep Jenny in a group home, but Jenny has repeatedly said she wants to live with her friends, Kelly Morris and Jim Talbert, who say they will gladly take her in.
The implications of Jenny's case are gaining statewide attention. The State of Virginia was recently sued by the U.S. Department of Justice for putting too many people like Jenny into group homes, instead of single family homes like Morris and Talbert's.
This week, Jenny was appointed an attorney provided the by the Quality Trust for Individuals with Disabilities, who will co-counsel Jenny's case with Robert Brown.
Legal Director Jonathan Martinis specializes in cases like Jenny's and says he will fight for her freedom starting with the guardianship trial in May.

• Jenny destined for group home, for now
• Jenny's guardianship battle to commence
• Attorneys meet in Jenny's case

Fewer services for patients with Down syndrome who are affected by Alzheimer's

  by Susan Abram from Pasadena Star News: She had learned to care for herself, to work and count her money so she could buy food, set the table, tell time and use a phone to dial 911. Now 60 years old, Denise Steinberg is forgetting the little things. She puts her blouse on backwards or her pants on inside out. Her attention span has dwindled. She is acting out toward her roommates. "I'm seeing the signs more and more, and I'm freaking out because where is she going to go?" asks Terri Budow, Denise's younger sister. "I love her and I want her to be around people who care and who love her, too." Steinberg was born with a developmental disability at time when she and people like her expected to live only until they were 30 years old. Now, she is part of an unexpected trend: Those with Down syndrome or other development disabilities are living longer, but in some cases, not necessarily better. More than 90 percent of those with Down syndrome develop Alzheimer's disease by the time they are in their late 40s. "This is something the community has never had to deal with before," said Roschell Ashley, director for residential services for New Horizons. The nonprofit New Horizons formed in the San Fernando Valley in 1954 to help those with developmental disabilities learn life skills, find employment and receive housing. But a new need has emerged. As their clients age, New Horizons saw that its group homes were not adequate

for elder clients with Alzheimer's and dementia. Of the nearly 700 clients the agency serves, more than half are 40 years or older. So in 2008, the agency began plans for a six-bedroom group home just for those with Down syndrome who develop Alzheimer's, one of only a handful in California and nationwide.

wanting to live as independently as possible

from miamiherald.com:

How will my child fare when he leaves home? And what will happen to him when I'm gone?

These are questions most parents worry about. But they weigh especially heavily on the parents of children with autism, Down syndrome and other developmental disabilities.

"Parents say this all the time: 'When I'm no longer here, I want to know they're still going to have a place to live and somebody is going to make sure they're OK,'" said Jim Whittaker, executive director of The Arc Jacksonville. "That's the biggest fear the majority of families have."

It's a fear that will become even more common in coming years, as the growing number of children with disabilities become adults with disabilities.

When The Arc recently began moving forward with plans for a 32-acre community near Beach and Hodges boulevards - planning to break ground in 2013 and have the independent and semi-independent living ready in five to 10 years - Steve and Joy Gutos were among those who viewed it as a godsend.

Their 25-year-old son, Ryan, lives at home now and has a part-time job as an office assistant at the Duval County Public Defender's Office. But he would like to eventually live in his own place. And his parents would like to know the place is a good fit for him, not only now, but in the future.

They've spent years researching options near and far, not feeling quite comfortable with group homes or supported living in the general community. Something like the Hodges Community seemed like the perfect mix of independence and structure.

"We're not saying the other alternatives are wrong, but we believe this is what is best for our son," said Steve Gutos, a board member at The Arc. "It's certainly a choice that needs to be there for everyone."
Not everyone agrees.

The federal government has proposed a rule change to Medicaid - specifically the Home and Community-Based Services Waiver - that would mean such funds could still be used to live in group homes and supported living in an apartment or condo, but not for something like the Hodges Community.

"It's not going to kill it," Whittaker said. "But it is going to make it much more difficult for people who don't have means to live there."

The reason some want the rule: They believe a planned community like this is a step backward toward the days of institutions. And they say the rule, which would only permit funding for care that allows patients to "engage freely in the community," would ensure the inclusion of disabled adults into society.

Supporters of The Arc's plans say the community would be anything but institutional - and would be a better fit for some than a small group home or supported community living.

"The Arc Jacksonville and these families aren't saying to other families we want to take away your choice," Whittaker said. "We just want this other choice."

So during a public comment period that ended on a Tuesday, supporters of the Hodges Community have been writing letters to the Centers for Medicare and Medicaid Services (CMS).

One of those letters was written, with the help of his mother, by Ryan Gutos.

He and his parents have visited some very nice group homes. But he told his parents he didn't want to live there, that they seemed too restrictive. And the idea of trying to live mostly on his own, in the general community, didn't appeal to him (and concerned his parents). A community designed for adults with disabilities excited him (and gave his parents peace of mind).

In his letter, he explained that he has lived at home with his parents and younger sister, but eventually would like to live in a neighborhood with his friends. He wants to drive a golf cart around the community, hang out, go to church, listen to country music and keep working at the Public Defender's Office.

"If this rule is passed, I won't be able to live there," he said. "Please allow my funding to stay with me no matter where I choose to live."

In her letter to CMS, Joy Gutos explained there isn't a "name or label" for her son's disability, other than that he is developmentally delayed. She explained many of the things he can do. Dress himself, get ready for work, ride his bike around the neighborhood, win over people with his endearing demeanor. But she also said, "Ryan will never make wise decisions. He always will be vulnerable."

She described how he can count money if he tries really hard, but can't tell how much he should get back from a transaction. He won't give himself medicine. He doesn't turn off the shower unless told to. And just when they think he could live in the general community, there is some incident that reminds them he needs more security and supervision.

"If he has these two things, he will surprise us, as he has many times in the past, not with his disability, but with his ability," she wrote. "The Arc Jacksonville has plans to build exactly what we're looking for."
She pointed out that the rule will continue to allow this funding to be used for hundreds of retirement communities in the state. But if enacted, it won't be available for the small handful of communities developed or planned for disabled adults.

Could Ryan continue to live at home? Absolutely, she said. But is it the best thing for him? Not at all. He doesn't want to live at home forever. And, of course, the reality is that he can't.

"There are no other family members who can take Ryan in when we are gone," his mother wrote. "This is his future. Please do not impose this rule on us."