Associated Press / Friday, April 20, 2001
OUTSIDE THE LIMESTONE:
Aging parents await help for disabled
By Rick Callahan
NORTH VERNON, Ind. (AP) -- For 59 years, from the time she was a 19 and married less than a year, one aspect of Kathleen Busse's life never changed: her daily care of her mentally retarded son.
With an IQ of 29, Jerry Wayne Busse has needed help with everything from taking a bath to dressing himself since he was born just two months after the United States entered World War II.
Although her late husband, Ronald, and the couple's four other children helped over the years, Kathleen, now 78, always carried the lion's share of that burden.
After Ronald died in 1991, Kathleen's role as her 200-pound son's sole caregiver grew even as her high blood pressure and arthritis worsened.
But last fall, after years of soul-searching and procrastination, she made the painful decision to find a place where her son could live with supervised care.
Her plight is shared by thousands of aging Hoosier parents who kept their children at home, rejecting advice to send mentally or physically disabled sons or daughters to state institutions.
Now, many of them are in their 70s and 80s and approaching the day when they can no longer care for their now middle-aged children.
Neither the state, with waiting lists numbering in the thousands, nor the General Assembly, facing tight fiscal times, are prepared to meet these parents' ever-growing needs.
Even the number of parents needing care for their disabled children isn't clear, although a 1998 state report warns that a "large hidden need" for housing and care services will emerge in 10 to 15 years as the children's parents die or fall ill.
The same report estimates that there are at least 56,000 Indiana residents with developmental disabilities -- including 20 percent, or 11,000, who are 50 or older. And many have always lived with their parents.
"The truth is, we really don't know the hard numbers, how big the problems are going to be, but we know it has to be big," said David Mank, director of the Indiana Institute on Disability and Community, an Indiana University group that researches disability issues.
The uncertainty arises from two factors. First, the baby boomer generation brought a corresponding spike in births of children with mental and physical disabilities.
At the same time, their parents were the first generation to opt in large numbers not to send their children away to institutions, taking on a child's needs as their private mission in life.
In many cases, family burdens come to light only when parents die or seek help in desperation after their health fails, said John Dickerson, executive director of The Arc of Indiana.
Dickerson, whose group advocates on behalf of disabled Hoosiers, said many such parents are fearful that their children will end up in a sterile state institution.
"They've spent their lives being a caregiver, so they understandably put this off," Dickerson said. "But if you wait too long, you're leaving the whole thing up to chance."
Kathleen Busse wanted to do no such thing. She began the lengthy process of getting Jerry's name on a state waiting list for a group home -- an opening she was told could take two to four years to find.
But early this year, as that process was still underway, she learned about an opening at a group home in Trafalgar, about 35 miles northwest of her North Vernon home.
Based on her immediate needs and Jerry's Medicaid eligibility, the home accepted him in early March.
A mix of emotions -- relief, guilt and fear -- linger for Kathleen, who is keenly aware that Jerry's transition to his new home will be rocky after living his whole life under her loving care.
"The move hasn't been an easy thing, but I think now that it will be OK," she says. "I'm satisfied that he's had a better life than some of those kids in the institutions. He's probably even been spoiled a bit."
While Kathleen was able to find a group home for Jerry in a matter of months, thousands more like him still wait for help.
Two years ago, the Indiana General Assembly appropriated $39.3 million to begin moving some of the roughly 6,000 developmentally disabled people off the state's waiting lists and into community-based settings such as apartments or group homes.
For the first time in recent years, the names on these lists began moving, Dickerson said. By this July, the funding is expected to have moved about 1,700 people into group homes or other settings.
But Dickerson worries that state lawmakers won't follow through on the next installment of funds for the disabled for the next biennium.
Although the Democrat-controlled Indiana House's state budget version had included $49 million for services for the developmentally disabled and another $17 million for wage increases for care workers, the GOP-controlled Senate's version stripped all of that money away.
Senate Finance Committee Chairman Larry Borst, R-Greenwood, said the state could not afford to pay for southeastern Indiana's Muscatatuck State Developmental Center and also build three regional centers for the mentally and developmentally disabled that Gov. Frank O'Bannon wants.
That impasse was resolved Thursday when O'Bannon announced plans to close Muscatatuck by December 2003 and move its 279 residents to community settings such as apartments or group homes, or to other state facilities.
Borst said Friday he would "find the money" to continue moving the disabled off waiting lists and also fund the three regional centers.
State Rep. Sheila Klinker, who is the chairwoman of the state's Mental Retardation and Developmental Disabilities Commission, knows first-hand the heartbreak of caring for a developmentally disabled relative.
Her 71-year-old sister, Carol, has Down Syndrome and lived with their mother until she died at age 84 in 1989. Carol now lives in a rental property behind Klinker's Lafayette home with the assistance of a part-time caretaker.
Klinker, D-Lafayette, attributes her sister's long life with Down Syndrome -- a genetic condition that often kills by the person's early 50s -- to the care Carol has received from her loved ones. "She's one of the oldest living persons with Down Syndrome and we believe that's because she lived at home and got love and attention," she said.
Funding issues aside, the state's Family and Social Services Administration is forging ahead to revamp the state's waiting list system, which now operates on a first-come, first-service basis.
The state currently has at least 21,000 people on 22 different waiting lists for various levels of care for the disabled and aged.
The goal is to take all those lists, some of which are maintained only on paper, and computerize them, removing duplicated names and assessing who needs immediate help, FSSA spokesman Andrew Stoner said.
"We need to have good lists so we can get the services to the people who need them most urgently," Stoner said.
Not only does the state need to gather better information, said Mank of IU, it also needs to go into communities to find elderly parents who will soon need help caring for their disabled children.
Bringing all those facts together is crucial to helping the state prepare for the emerging social need, Mank said.
Dickerson, of The Arc of Indiana, believes the state has a clear obligation to help parents of developmentally disabled children.
"These families have literally saved the state millions and millions of dollars by doing the right thing in their eyes and caring for their children themselves," Dickerson said.
"Now we need to make sure their son or daughter can stay in the community in a safe setting. We owe that to them."
******************************************************************************
A Life of Caring
By Rick Callahan
Associated Press
NORTH VERNON, Ind. (AP) When Jerry Wayne Busse was born on Feb. 17, 1942, to southern Indiana dairy farmers Ronald and Kathleen Busse, he looked like any other bright-eyed baby.
Flush with pride of their firstborn, the new parents didn't notice anything wrong at first. But a sense of dread grew as their baby lagged far behind the usual milestones.
"I knew when he was about a year old," Kathleen, 78, recalls wistfully, describing how Jerry was still struggling to crawl by his first birthday, when he should have been trying to walk.
Doctors eventually confirmed her fears: Jerry was severely mentally handicapped.
The Busses, who never learned the cause of Jerry's retardation, accepted the news as best as any young couple could, with the help of their faith and some support from friends and family.
Over the years, others close to the couple urged them to do themselves and their four other children a favor and place Jerry in a state institution.
But the Busses wanted him to have as normal a life as possible and even enrolled Jerry in the first grade when he was 6.
After three days, however, the school's principal called to say it wouldn't work, Jerry was disrupting the class.
"So we took him home and said, 'We'll just love him and care for him and do what we can for him because he's ours,'" Kathleen says.
Growing up on his parent's Decatur County dairy farm, Jerry never lacked for companionship. From 1944 to 1951, he was joined by three brothers and a sister.
But it wasn't long before his younger siblings passed him up.
"It was like he was our older brother and then gradually he became the younger brother. We all looked out for him. That's just the way it always was," says Jack Busse, 54, who shares guardianship of Jerry with his mother.
In the Busse household, everyone except Jerry worked to earn money for the children's college educations. The boys had a summer lawn-mowing service and after Ronald quit dairy farming to start a fishing lure business, the family spent hours carefully crafting lures.
Kathleen added to the income by working in a school cafeteria and a drugstore; she also grew a large garden and canned vegetables to stretch the family budget a little further.
By the early 1970s, Jerry's four younger siblings had gone off to college. Soon, they were married, leaving Jerry alone with his parents. Once the kids left the nest, Ronald and Kathleen never vacationed together again. Ronald went on fishing trips with his buddies to prime fishing spots in Canada. Kathleen would take bus trips, seeing the sights from the window of a Greyhound bus with a widowed neighbor.
It wasn't an ideal arrangement, but the couple still had fun on their solo trips. "You really don't remember the things you weren't able to do as much as you do the good times," Kathleen says.
For Kathleen, bad times arrived in the 1980s, when Ronald was diagnosed with lung cancer.
He fought it off twice with radiation and chemotherapy, but when it returned a third time, there was little doctors could do. Ronald died in 1991, the year of the couple's 50th anniversary.
Kathleen chose not to take Jerry to the funeral because she knew he couldn't really understand the concept of death. Even today, Kathleen says Jerry will sometimes ask out of the blue: "Mommy, daddy dead?"
"I'll say, 'Yes he's gone Jerry and he's not coming home,'" she says.
After Ronald died, Kathleen sold the couple's house and moved with Jerry to the mobile home that had been her husband's cherished weekend retreat for fishing trips.
Jerry's tiny bedroom in the tidy, antiques-filled home was watched over for years by two life-sized images of John Wayne - one a black and white poster of The Duke in his youth, the other a cardboard-backed color cutout of the silver screen cowboy in his later years.
Since he was a youngster in the 1940s, John Wayne was Jerry's hero. Half a century later, his enthusiasm for the actor hasn't waned.
"Sometimes in the middle of the night I'll hear him sit up and talk to them," Kathleen said. "He'll say, `Hi Duke! I'm Jerry Busse!'"
Though Jerry weighs 200 pounds and at 59 is balding and has a wrinkled face, he has an IQ of 29 and the mind of a child.
He has always relied on his mother to prepare his meals, wash his laundry, shave him, help him bathe and dress.
In return for his mother's tireless work, Jerry performed a single daily chore: retrieving the mail from the mailbox. Inside the family's lake home, he spent much of his time in his playroom with a television and a toybox brimming with model cars and stuffed animals.
As his mother chatted with a visitor earlier this year, Jerry sat quietly in his easy chair, until the theme song of "Gomer Pyle, U.S.M.C." began playing on his TV.
Hearing the song, Jerry bolted from his chair to watch the opening scene, with Jim Nabors saluting with a toothy grin. When the song faded, Jerry raided his toy chest and returned to his chair with a stuffed weasel.
His face - tight, smiling and lined with wrinkles - slowly relaxed as he rocked contentedly with his toy, oblivious to the cares of the world.
"I think he's had a good life," Kathleen says. "I think he's happy."
Despite her cheerful outlook, Kathleen was worn out by years of caring for Jerry and battling arthritis and high blood pressure. Last fall, she took the first steps to putting Jerry's name on a state waiting list for a group home.
She thought it would be years before he got a space.
It happened far sooner.
Early this year, Kathleen learned about an opening at a group home in Trafalgar, about 35 miles northwest of her North Vernon home. Jerry's Medicaid eligibility and his mother's immediate needs won him the spot.
In early March, he moved into the group home, which is one of 16 operated in Indiana by New Castle-based Cardinal Service Management Inc.
As Kathleen drove Jerry to the powder blue vinyl-sided home, she tried to soothe his concerns by explaining that they were going to "Jerry's little blue house."
Meanwhile, Jack Busse loaded some of Jerry's things, including his life-sized John Wayne cutout, into his truck and drove to the group home, which is on a quiet street near a Dairy Queen.
There, Jerry joined seven other developmentally disabled residents, who are watched over by a 24-hour staff. Step by step, staff members are encouraging Jerry to do things for himself.
Kathleen's friends, relatives and neighbors, meanwhile, are happy that she will finally be free to enjoy her golden years and visit her children, eight grandchildren and one great-grandchild.
But it won't be painless. "It's going to be a big adjustment for both of them," Jack says.
Managers at the group home asked the Busses not to visit Jerry for the first month, giving him time to acclimate to his new surroundings.
As days stretched into weeks, though, Jerry apparently thought he had been abandoned.
When Kathleen and Jack were finally reunited with him in early April, at a meeting in Franklin, Jerry broke down and sobbed. He ran to his mother's car and begged to be taken home.
Kathleen quickly defused the situation by asking Jerry if she could go with him to his "little blue house" to see the new cowboy boots the staff had bought him.
"It was like a switch was turned off," she says. "He got into the van and we followed him back to the home. All he wanted was to have us come and see him and to be with us."
On her next meeting with Jerry, Kathleen brought her son a cowboy hat that had remained behind in his old bedroom.
While Jerry sat on the edge of his bed, repeatedly trying on his favorite hat and then hooking it onto his bedpost with glee, she unpacked summer short-sleeved shirts from home.
Although Jerry now knows that his mother will be visiting him, he has yet to fully accept his new home, or his 71-year-old, wheelchair-bound roommate.
On Kathleen's second visit to the home, he wasn't in a good mood. To a series of upbeat questions she posed, Jerry was taciturn, repeatedly answering: "No!"
At one point, as his mother was still working to slip his warm-weather shirts onto clothes hangers, Jerry's thoughts returned to his old home.
"My bed at home?" he asked.
"Yes, Jerry" Kathleen replied, "Your bed's still at home."
"Shoot," he said quietly to himself.
Subsequent meetings with Jerry have been emotional, but both Kathleen and Jack, a systems analyst at Eli Lilly and Co. in Indianapolis, are hopeful he can adjust to his new life.
Jack said his siblings - Judy, 56, a registered nurse in Vincennes; Rick, 53, a medical diagnostics salesman in Palmdale, Calif.; and Jim, 49, a chemist at U.S. Steel in Hobart - are happy for their mother.
This summer, between occasional visits to check in on Jerry, she plans to do some long postponed traveling to her widely scattered children.
"I've had a very fruitful life, and Jerry has been a big part of it. But now I would like to jump on a plane whenever I want, to see everyone, and see some new places," she says. "Now that would be something."
*************************************************************************************************************************
Sunday, February 11, 2001
Caring for Kenneth
Providing for disabled is becoming more complex as they age
By ROBERTA HEIMAN, Evansville Courier & Press
For almost 46 years, Ruth Griepenstroh has taken care of her son.
Never in all that time did she imagine his fate could be decided by state and federal
bureaucrats, or that a government
rule could mean she couldn’t be with him anymore.
Now she knows.
The 81-year-old mother has battled for months seeking approval for her son, Kenneth, to
remain with her in a Tell City,
Ind., nursing home.
Kenneth has cerebral palsy. He cannot talk, walk or feed himself.
Tending to his needs has been Ruth Griepenstroh’s priority since he was born. And she
did it all by herself at their
home near Tell City after her husband died in 1995.
But last summer — after she became ill, then fell and broke her hip — she and
Kenneth entered Tell City’s Oakwood
Health Care Center.
His placement there was arranged on an emergency basis by Perry County’s Adult
Protective Services because he couldn’t
be left alone.
But state officials said Kenneth’s placement was “not appropriate.” They
cited a federal Medicaid rule that says people
with developmental disabilities, such as cerebral palsy, should be in community settings
and not in nursing homes or
institutions.
Plans were made to move Kenneth into an apartment in Evansville and hire seven people to
work in shifts around the
clock to take care of him.
“They (the state Division of Developmental Disabilities) said they wouldn’t be
able to recruit that many employees in
Tell City so he would have to move to Evansville. … They were prepared to spend
$13,000 a month to keep him in an
apartment,” said Kenneth’s attorney Kathryn Rybak, staff attorney with the Legal
Services Organization in Evansville.
Rybak argued that the state’s plan was both unfeeling and not in Kenneth’s best
interest.
“For the mother’s sake as well as his, you hate to see them separated in the
last years of her life,” she said. “You
have to think, why?”
Additionally, “It just seems extreme to put him in an apartment with a group of
attendants hired to care for him —
because he’s so vulnerable. He couldn’t even tell you if he was being abused or
ignored.”
Alice Griepenstroh, 60-year-old widow of Kenneth’s older brother, said the more she
heard state officials talk about
the apartment plan, “the more upsetting and absurd it seemed. It was very
traumatizing.”
As the only relative Kenneth and his mother have, she joined in their appeal for help.
“But we ran into one brick wall after another,” she said. “It’s just
been such a story, you wouldn’t believe it.”
Their story is part of a major debate in Indiana over the state’s funding of and
policies regulating services for
people with disabilities.
While the Griepenstroh family has been pleading for Kenneth to remain in a nursing home,
two class-action lawsuits have
been filed against the Indiana Family and Social Services Administration by people with
disabilities who don’t want to be
in nursing homes or institutions. They want to live in their communities.
The lawsuits, filed by groups in Lake County and St. Joseph County, contend the state is
violating a 1999 U.S. Supreme
Court ruling that people with disabilities must be given the choice of living in a
community setting.
Indiana lags far behind most other states — 47th — in providing community-living
options for eligible people, said
Teresa Torres, director of the Everybody Counts Center for Independent Living in
Merrillville, Ind.
That agency serves several clients involved in the Lake County lawsuit, including three
who are on waiting lists for
in-home services to avoid institutional placement. The three are among more than 8,000 on
waiting lists statewide.
Torres said the lawsuit was filed “only after months and months” of trying to
get Indiana to follow the Supreme Court
ruling. “They’re not doing it,” Torres said. “They’re just giving
lip service.”
The federal Health Care Financing Administration, which oversees Medicaid payments for
services to people with
disabilities, has told Indiana and other states to comply with the court’s ruling.
The Supreme Court said all people with disabilities should have the option to make an
“informed choice” to move to a
community setting “if appropriate and if the person is not opposed.”
The key phrase, however, is “if appropriate.”
The Health Care Financing Administration says it is not appropriate to place people with
developmental disabilities in
a nursing home if they do not have a medical condition that needs nursing care.
Kenneth’s inability to walk, talk, feed himself or perform any other activity of
daily living is not considered a
qualifying medical condition, officials said.
Those inabilities “are not a medical condition but a result of a developmental
disability,” said Nadine Renbarger in
the Health Care Financing Administration’s Division of Survey and Certification
regional office in Chicago.
If Kenneth were unable to feed himself because of arthritis, he might qualify for
nursing-home care. But because his
inability is a result of cerebral palsy, the federal agency says he doesn’t need
nursing care but needs “specialized
services which can best be provided in a community setting.”
The specialized services would range from custodial care to “developmental
enrichment” and training to help him learn
to be more independent, said Mary Anderson, case manager in the Southwestern Indiana
Regional Council on Aging’s case
management program.
That program is contracted by the state to review and determine the eligibility of all
nursing-home placements in the
Evansville area.
Anderson and Renbarger, who said they couldn’t discuss Kenneth’s case because of
confidentiality laws, talked in
general terms about the issues involved
Renbarger said the federal agency’s goal is to prevent what has happened in the past
— when thousands of people with
mental retardation and developmental disabilities were placed in nursing homes that were
inadequately staffed or trained to
care for them.
She agreed that “it’s not a pretty picture” to separate a parent and child,
as in the Griepenstroh case. But she said
the priority should be on making sure Kenneth is in the most appropriate setting and
receiving the services he needs after
his mother’s death, “and it certainly will not be in a nursing home.”
“I see this as an ongoing issue with families who have children with special
needs,” Renbarger said. “As they get older
and require special services, they (parents) have to start thinking about what’s best
for them when they’re gone.”
But Anderson said a big problem, at least locally, is lack of enough community-based
options.
“The southern part of Indiana has never been adequately funded for any type of
services for the mentally retarded and
developmentally disabled, or the mentally ill,” she said. “It’s a very
vulnerable population.”
For years, there have been long waiting lists for community-based services because of
funding shortages for the
programs in Indiana.
Anderson said the service agencies recently have begun to identify a growing number of
families, such as the
Griepenstrohs, who “took care of their own and have never been involved in the
system. But now the parents are elderly and
they need help.”
“I was told when we started that these would be the most gut-wrenching cases,”
she said. “And they are.”
The Griepenstrohs have received a reprieve. After efforts by Rybak and inquiries by the
Evansville Courier & Press,
state officials recently reversed their earlier decisions and said Kenneth can remain in
the nursing home.
But there have been earlier extensions and reversals, Alice Griepenstroh said. “I
guess you could say I’m holding my
breath,” hoping this time it’s permanent.
In the meantime, Ruth Griepenstroh said, “It’s been very upsetting. There have
been many sleepless nights.
“When Kenny knew one of those people (state officials) were coming, he looked at me
like he was scared to death, with
fear in his eyes. He was scared to death he would be taken away.”
---------------------------------------------------------------------------------------------------------------------------------------------------------------
Indianapolis Star
Saturday, Jan. 6, 2001
A struggle for survival
Medicaid limitations tax family's resources
By Gina Barton
Indianapolis Star
Scott Schweller would like to see his 4-year-old son, Ryan, stand up
someday. Nancy Schweller hasn't set her sights so high; she knows her son
never will walk. But maybe, before his disease takes him from her, she will
see him crawl.
"I would like to see him getting the attention he needs, the therapy he
needs," Scott Schweller says of his son, who suffers from a rare brain
disease that has left him physically and mentally disabled.
Although Scott works 70 hours a week, he can't afford to provide help for
his son. And although the government has a program in place to assist people
like Ryan, the waiting list is so long that he might not live to reach the
top.
Many in the Indiana General Assembly believe such people deserve services;
whether there's room in the budget to help them remains to be seen.
The state spends more than $1billion a year on traditional Medicaid, which
provides health care for 650,000 poor and disabled people. And those costs
continue to rise.
The Medicaid waiver program, which supports disabled people who live with
their families or in the community rather than institutions, is just a small
part of the picture. Regardless of income, disabled people can receive
Medicaid waivers that pay for such services as doctor visits, hospital care,
prescription drugs, therapy and modifications to their homes.
But unlike traditional Medicaid, funding for the waivers is limited. In most
cases, someone has to die for another person to move up on the list.
Sometimes, people actually move down on the list if their needs are deemed
less urgent.
In Indiana, nearly 5,000 people currently benefit from the waivers. More
than 7,000 people are waiting, including Ryan Schweller.
Nancy Schweller cares for Ryan full time. Scott makes about $50,000 a year
as a night-shift truck driver. Still, they can't afford to take care of Ryan
and his two siblings. Ryan's care alone costs about $6,000 per month.
"We've had judgments against us for medical bills," Nancy said.
If the Schwellers were to put Ryan in an institution, his care would be paid
for by the government -- even though it would cost more than keeping him at
home. The average daily cost of care with a waiver is $154; in
state-operated facilities, it ranges from $221 to $506. Although the number
of institutions has decreased in recent years, about 1,600 developmentally
disabled Hoosiers live in them.
A task force appointed by Gov. Frank O'Bannon in 1997 recommended boosting
state funding to help disabled people by $39.3million in 2000-01. Part of
the money, approved by the General Assembly two years ago, was used to move
377 people off waiting lists by funding more waivers.
The task force's plan calls for similar sums to be spent in the next two
budgets. But money is tighter now than it was at this time last session.
"Whether we can expect to get that amount or not is in question," said Rep.
Sheila J. Klinker, D-Lafayette, a member of the House Ways and Means
Committee. "We may have to look at scaling back."
Katie Humphreys, who runs the Indiana agency that oversees Medicaid,
emphasized that even if the budget does not allow for new resources,
services to disabled people will not decrease. She does not want to see
financially desperate families giving up their loved ones to institutional
care.
"There will be a strong commitment to develop community-based resources,"
she said. "It's a priority of the governor, and therefore a priority of the
agency."
Further, there is support in both parties in the General Assembly.
The task force also recommended more help for families to navigate through
the complex system, which includes five kinds of waivers, each with its own
waiting list. People may be eligible for more than one.
The year the task force was created, Ryan celebrated his first birthday. He
had trouble holding his head up and couldn't grip a rattle. At first,
doctors said he had cerebral palsy. Later, a neurologist diagnosed
polymicrogyria, a brain disorder discovered just nine years ago. There are
only about 80 known cases in the United States.
A normal brain has six layers; Ryan's has only four. The doctor used this
analogy: A normal brain is like the Rocky Mountains; Ryan's has only rolling
hills. The condition sometimes is genetic, but it might have been caused by
a bout with pneumonia that Nancy Schweller suffered during pregnancy.
The scariest part of the diagnosis was the doctor's prediction that Ryan has
only a 50 percent chance of living to age 10.
"It ruined my life," his mother said. "It just takes over your whole life.
The grieving stage is always there, even though he's still with me."
As Ryan's condition deteriorates, his expenses increase. Although his
father's medical insurance helps, it has deductibles, and it doesn't cover
everything. For example, last summer, Ryan had to stop eating the pizza and
hamburgers his mother made for dinner. He now has to be fed through a tube.
He goes through four cases of liquid nutrition monthly; each costs $96.
Senate President Pro Tempore Robert Garton, R-Columbus, has heard stories
like the Schwellers' often. No matter how much money a family earns, it's
never enough to care for a severely disabled child, he said.
Garton is hopeful that more money to move people off waiting lists will be
part of the 2002-03 budget, to be finalized at the end of April. Klinker
also seeks that goal.
"We're certainly working to get people in community settings that are the
best places for them . . . where they can be independent in a family
environment," she said.
Advocates for people with disabilities support both the additional funding
and better administration of the money.
"I think we can do better at making this more seamless and easier to
access," said Humphreys, the state Family and Social Services Administration
chief.
To that end, she has hired an expert who helped reorganize a similarly
troubled waiver system in Pennsylvania. The new employee will work to manage
waiver funds more efficiently so more people can move off waiting lists
regardless of the new budget.
People who die before reaching the top of the list are removed from it.
Their families receive nothing from Medicaid and remain responsible for the
unpaid medical bills.
Ryan's parents thought their years of looking for help were over in
September, when he reached the top of one list. But then they were told he
might not qualify for that particular waiver. In the meantime, he is on
several other lists. His parents estimate it will take about four years
before he qualifies for the waiver that would provide him with the most
benefits. While other government and private programs also assist people
with disabilities, they aren't as comprehensive as Medicaid.
John Dickerson, executive director of Arc of Indiana, the state's largest
advocacy group for disabled people, says the Schwellers' experience is not
unique.
"We make it very hard for people to manage their way through this maze and
get some help," he said. "Many times they're told it will be five, six, 10
years before (they'll) get any help. Some wait in the wrong line for years.
They get to the front and then are told they need to go to the end of a
different line."
He hopes that despite the budget crunch, state legislators will come through
with the $39.3 million.
The Schwellers' only other choice would be to get divorced, one caseworker
told them. That way, because Nancy has no income of her own, Ryan would
qualify for Medicaid out of poverty.
His parents think that option is ridiculous. They married because they
wanted to raise children together in a loving home. And while they hold out
hope for a Medicaid waiver, that's not their greatest expectation for their
son.
"I want the health to be there," his mother said. "The longer I can keep
him
healthy, the longer I can keep him with me."
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