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---------------------------------------
VOR Weekly E-Mail Update
May 16, 2008
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FOCUS ON ARIZONA TRAINING CENTER AT COOLIDGE
1. Home invasion: The Arizona Training Program at Coolidge is
the only home some developmentally disabled people have known
Coming Up: May 23: Focus on Aging Crisis (Texas, Nationa):
“When Crisis Hits the Disabled - Limited Options for Support and
Housing Exist for Aging Caregivers and Their Children”
================================================================
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1. Home invasion: The Arizona Training Program at Coolidge is
the only home some developmentally disabled people have known
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Summary:
This article provides an excellent history of
deinstitutionalization leading up to the present day challenges
for residents of the Arizona Training Program at Coolidge (ATPC),
and their families. There is legislative and advocacy pressure
to close the center, with families of residents, important
legislators, and others. Among those supporting is ATPC is the
former Director of the Arizona DD Council who helped close
another AZ facility, but has now switched his position in
support of ATPC because, “all the promises [about supports and
community integration] made have not happened."
Megan Irwin, the reporter for this story, does a terrific job of
laying out all the tired arguments in support of
deinstitutionalization, from the stigma that continues to plague
the very word “institution” to the alleged cost of running ATPC,
while also showing the faults of these arguments. She points out
that the strongest anti-ATPC advocate is a large private ICF/MR
provider (Hacienda) who doesn’t seem concerned that many
anti-institution advocates and possibly some Arizona
legislators, could ultimately address the similarity between
ATPC and Hacienda – both are ICFs/MR and the fact that one is
public and one is private doesn’t make one any less a large ICFs/MR.
Ms. Irwin also took the time to visit ATPC, something many
anti-institution advocates haven’t done, and offers her
observations:
“More than 100 of the people who live here are diagnosed with
severe or profound disabilities, and therapy like this is how
the staff keeps them active. No one spends all day in any one
room. They all go to work, their retirement program, or therapy
every weekday.
A tour of several of the living cottages reveals clean quarters,
where most clients have their bedrooms decorated however they
want (Spider-Man is popular here). Each room feels
individualized with photos, some over 50 years old, of family
members, and personal belongings such as china dolls (in a glass
case) purchased for the residents. The facility just bought a
$10,000, high-tech bathtub to help caretakers bathe their
fragile clients. One cottage is outfitted for the
sight-impaired. Three-wheeled bikes are parked outside others.
In light of how familial ATPC feels, it's easier to understand
why parents, guardians — and some others — are so insistent it
stay open.
[Note: A key contributor to this story was Deb Henretta, whose
brother is a resident at ATPC and credits his survival for the
care they have provided Vincent since his teens. Deb is a VOR
member and is attending the VOR Annual Meeting and Washington
Initiative to represent Arizona this June. Deb is also
advocating for the development of a Community Resource Center at
ATPC, which reporter Megan Irwin covers in some detail in this
article].
Like what you have read? Let the paper know: http://www.phoenixnewtimes.com/feedback/EmailAnEmployee/?department=letters
By Megan Irwin
May 01, 2008
Phoenix News Times
She was committing her boys to an institution called the
Arizona Children's Colony. That's what you did in 1952 with
children like the Arrington twins, born with cerebral palsy and
severe mental retardation, destined to live life in a
semi-vegetative state (though they would surpass their life
expectancy many times over).
The day they were born, Arrington's doctor told her to take them
to the state mental hospital at 24th and Van Buren streets in
Phoenix.
Instead, she brought them home, expecting to watch them die.
Everyone told her to give up. When the twins both contracted
staph infections around their second birthdays, a doctor
agonized over whether to give them penicillin to save their
lives. Arrington worked day and night to keep the babies alive,
and she did it by herself.
In 1949, when Faye Arrington's sons were born, the implications
of raising a disabled child were much different than they are
today. There was no state Division of Developmental Disabilities
to provide funding for therapy. There were no parental support
groups. There was no nonprofit Arc or federal Americans with
Disabilities Act.
"It took me 24 hours to feed them, and then I'd start all over
again," says Arrington, now 75 and living off the little she
saved working as a meat wrapper for more than 40 years. "I had
no family supports, no nothing. And we were looked at as a bad
family for having something like that."
She already had one daughter. She was pregnant with another who
would also be born disabled. (Her husband divorced her and
remarried after the birth of their fourth child.) She simply
could no longer support young Darrell and Dorrell.
So on March 19, 1952, Arrington drove her boys from Mesa to the
brand-new Arizona Children's Colony, six miles outside of
Coolidge, a town southwest of Phoenix near Casa Grande. They
were the facility's first residents.
Darrell and Dorrell Arrington are still there today, curving
toward each other in a perfect mirror image. They can't stand to
be apart. Their mother says their wheelchairs have to be parked
next to each other in church so Darrell can reach out for his
younger (by five minutes) brother's arm. Once he grabs onto it,
he falls asleep.
A couple of years ago, Faye Arrington brought her children home
to Mesa for the first time in more than 50 years. She sent out
invitations with photos of Darrell, Dorrell, and their younger
sister Darla Kay. More than 70 family members showed up to meet
them. Some didn't even know they were alive — or, for that
matter, had ever been born — until that day. Staff from Coolidge
drove the Arrington siblings to Mesa and sent a nurse along to
take care of them.
At the end of the day, they returned to the center. After all,
that is their home.
The Arringtons and the other 129 people who live at the facility
now known as the Arizona Training Program at Coolidge (ATPC)
spend their days in relative peacefulness, but the world around
them has changed.
Today, no one would dream of telling a mother to commit her
handicapped child to an insane asylum, or any other kind of
institution, for that matter. Starting in the '70s, the civil
rights movement expanded to include people with disabilities and
the truth about deplorable living situations in institutions
began to come out. Nationwide, many facilities like ATPC have
closed, as efforts are made to include developmentally disabled
people in the community.
There's a huge stigma around the word institution — conjuring up
images of shock treatments and One Flew Over the Cuckoo's
Nest-style lobotomies. It's a picture that lingers in the minds
of many disability advocates, who remember when ATPC was home to
more than 1,000 people, with beds lined up in large
barrack-style rooms and staff ill-equipped to take care of needy
residents.
The picture is much different now. At the facility in Coolidge,
things are tranquil. The Arrington twins, and others, are living
out their "retirement" in a place where they are safe and well
cared-for, according to their family members, staff at the
facility and a bird's-eye view (a three-hour tour, earlier this
year). In this case, the institution is anything but — it's
their home, and it's the only one most of its residents have
ever known.
But at the Arizona Legislature, the stigma lingers. Efforts are
being made to shut the facility and move the residents into
community group homes, or another intermediate-care facility. As
it turns out, the man behind the current effort to close
Coolidge is a direct competitor. He runs an Intermediate Care
Facility for the Mentally Retarded in Phoenix, where it costs at
least $112,993 per resident per year, only marginally less
expensive than Coolidge when it comes to the facilities' needier
residents.
Such efforts are nothing new. At a local level, the movement to
shut Coolidge began in 1979, with a legislative footnote that
forbade new clients. Nationally, a larger movement to close
institutions began in the '70s, when the President's Committee
on Mental Retardation vowed to reduce the number of
institutionalized people by a third. The Reagan years brought
budget cuts and the closing of even more institutions, and an
important U.S. Supreme Court case ruled against forced
institutionalization in 1999.
And it was a good ruling. The institutions of the past were bad,
and Coolidge's facility was no exception. But today, everything
has changed except its reputation, which is the crux of the
advocacy community's argument to shut it down.
Elliot Gory, a psychologist who has worked part time with
clients at ATPC for 30 years, says trying to reconcile the
current attitude toward institutions with the level of care ATPC
clients receive is quite a dilemma.
"The clients at ATPC have lived their lives there. That's all
they know," he says. "So here's the challenge: In America, the
ethic is integration, and I certainly support that. But for
these clients, that's all they've known."
The argument inside the Legislature, however, is clearly more
about money. A bill to shut ATPC was introduced this year in the
House Appropriations Committee and not, interestingly, in Human
Services, the committee that generally deals with DDD
legislation.
The bill was introduced by Republican Majority Whip John
McComish, who says the facility must close because it's too
expensive and because the clients can be better served
elsewhere.
McComish did not respond to a request for an interview for this
story, but he did explain his position at a legislative hearing
on the bill held March 5.
"I found that the institutionalization, if that's the correct
word, of the developmentally disabled community is not the
accepted model today. Community-based care is the best care for
people with developmental disabilities issues. The secondary
point is that the Coolidge facility is more costly. Thirdly, it
really takes very poor advantage of a very valuable state
resource [the land it sits on]," he told the committee.
At the hearing, he mentioned he had toured the Coolidge
facility, as well as another large, privately run facility in
Phoenix.
The bill was tabled at a hearing on March 12, but there's a
rumor it could re-emerge in the Senate toward the end of the
legislative session.
McComish used the word "institution" several times throughout
his statement. It's a word disability advocates have a hard time
overcoming.
But in the case of Coolidge, it's a misnomer. These days it's
more a nursing home than anything else.
State Representative Pete Rios has fought the facility's closure
throughout his entire 24 years in the Arizona Legislature. Rios
is a well-known Democrat and former Senate president who
represents the district in which ATPC — Coolidge's largest
employer — is located. He's not running for re-election, and
though he's always defended ATPC, he's now even freer with his
opinions.
"I'm totally against the closure of that training center. First
of all, because they're getting good care. These people that
want to close it say the state should not be running an
institution, a very bad image to conjure up," he says. "The
training center in Coolidge [consists of] cottages. They're
spread out, there's a lot of acreage. They have qualified staff,
they have doctors, they have dentists and specialists. Not only
should we not be closing the training center, we should be
making these service available to others because it's a great
resource."
But it's an expensive resource.
The center sits on 87 acres of the 320 acres of land owned by
ATPC, land designated by state law for use by the
developmentally disabled. Those in favor of closing the facility
wonder whether it is the best use for so many acres of land, and
say it could be sold, with the profit going into the state's DD
Client Services Trust Fund.
(However, on April 18, Governor Janet Napolitano approved budget
cuts that hacked $1.6 million from this account as well as $1.8
million from a fund for early autism intervention — leaving many
wondering if money from a land sale would actually end up
filtering back to developmentally disabled people.)
McComish is right; it does cost money to run. It costs $138,470
a year per person on average, and as the population dwindles,
the facility becomes more expensive to operate. The cost of
living at ATPC includes extras like dental care and specialized
wheelchairs. By contrast, the annual cost per person in a group
home is $38,938 a year.
Keep in mind, by statute, Arizona group homes can hold no more
than six people and do not include some of the benefits, like
preventive dental care, that ATPC residents enjoy. They're also
continuously understaffed, with a high turnover rate. Also,
housing and attendant care for the Arrington twins and others
like them would raise the figure a lot.
Coolidge residents live in cottages or larger dorm-like
buildings, depending on their medical needs. And some of them
are extremely medically needy in ways that go beyond the scope
of their disability. Many are fed through G-tubes and in a
semi-vegetative state. Some have lost their ability to speak;
others never learned how. The average age here is well over 50 —
the average mental age is much younger. More than
100 of the people living here fall at the most severe end of the
cognitive disability spectrum — and are dealing with the medical
complications that come with age (blindness, Alzheimer's, and
cancer, to name just a few) as well.
Still, everyone at ATPC has an individual program designed to
keep residents as active as possible. Many spend their days at
work (some go off-campus, others work piecemeal in a program
designed for them to earn money) or at retirement programs
specially designed for their needs.
After work, they receive therapy. At meal times, they are served
food prepared for them by a master chef from New York City. They
have wheelchairs specially adapted on-site for any individual
who needs one. The services are hard to get and expensive for
people living in community settings.
Many of ATPC's employees have been there 30-plus years, and the
clients have known each other their entire lives. They have
friendships that are easy to observe, even on a casual tour of
the grounds.
On a tour that lasted more than three hours, it was clear that
nothing about the place feels dark, scary, or institutional.
Though 70 percent of the Coolidge residents have family members
actively involved in decisions about their care, moving back
into the family home would put an incredible burden on parents
who are in the process of figuring out their own end-of-life
needs.
Blinda Mills — the older sister of the Arrington twins and Darla
Kay — says she's sure her mother would be dead if not for ATPC's
help.
"I doubt she would be alive because of the strain," she says.
Mills knows what the facility's closure could mean for her
family: She'd have to quit her job as a special education
teacher and move back in with her mother to help out. The state
would have to pay for round-the-clock nursing care and renovate
the house to accommodate the three disabled Arringtons, all of
whom are in wheelchairs, require several hours of physical
therapy each day, and are fed through G-tubes surgically placed
in their stomachs. They also require almost constant stretching
and physical therapy because of the crippling effect of cerebral
palsy on their bodies.
Aside from the stress to her and her elderly mother, Blinda
worries about what would happen to her siblings and other
residents at ATPC. (They would bring their family members home,
Blinda says. They don't trust other options.)
"It would be like a divorce or a death in the family for them,"
she says. "When you have been somewhere 50 years, that is your
home. They know the grounds. They know the people. It makes me
so mad. They're not cattle that you move from one pasture to the
next."
At the time Fay Arrington's children were born, in the '40s and
'50s, a disabled child was someone to be hidden from the
community. Institutions were a big industry — in 1940, there
were 100,000 people in state-run institutions around the
country. By 1960, that number had doubled.
Families with disabled children had to foot the bill for the
children's care. Arrington had to pay for her children to stay
at Coolidge until they were 19. There was no AHCCCS or state
budget for long-term care.
Willard Abraham, an education professor at ASU in the 1950s who
focused on teaching both gifted and disabled children, wrote in
his book Barbara: A Prologue about having a baby with Down
syndrome.
The book was written as a love letter and explanation to his
late daughter, whom he institutionalized shortly after her
birth, and dedicated to the "thousands of ill-finished children
of generations to come." Abraham, who, ironically, worked with
children at the Arizona Children's Colony (he even may have
known the Arrington twins), agonized over his decision to
institutionalize his daughter.
The book brings the mindset of the time sharply into focus: The
family views this child as an utter tragedy. The mother cannot
cope with the thought of a mentally retarded daughter. Abraham,
an expert and well-educated man, never once calls his daughter's
condition Down syndrome in the book — it's "mongoloidism" to him
and his contemporaries.
Doctors offer Abraham advice that's shocking to the modern ear,
but was considered normal at the time. A friend, then the
director of the Arizona Children's Colony, tells him, "I always
feel bad when parents are separated from their babies. Mongoloid
children are so lovable and easy to get along with . . . [but]
the time comes when institutions are better places for them to
be."
Abraham and his wife did send their infant daughter to Valley of
the Sun, a Phoenix facility, where she died of heart failure
four months later. Heart problems are common for children with
Down syndrome, and if Barbara had been born today, there's a
good chance doctors might have been able to detect a defect and
save her. Not so in the early 1950s.
Even families who were financially able to take care of their
disabled children were encouraged to send them away. The late
playwright Arthur Miller had a son, Daniel, who has Down
syndrome and was institutionalized in upstate New York for
years. Miller apparently never mentioned or wrote about his son,
according to an article published last year in Vanity Fair. It
was as if he never existed. (Daniel's mother, Inge, did visit
often.)
Miller, Abraham, Arrington — none felt they had a choice. To
someone like Arrington, who tried to care for her children in
the home without any help, a place like the Arizona Children's
Colony was a relief.
And over the years, the children grew up. Throughout the '50s,
older Coolidge residents were sent to the state hospital or
sent, with no place to go, into the community. By 1962, the
colony shifted its focus, and the Legislature changed the law to
allow residents to stay at the colony after they'd grown up.
Conditions weren't perfect — far from it. In 1977, a
class-action suit forced the center to reduce the number of
people living there and dramatically improve living conditions.
For a long time, ATPC wasn't a place you'd want a loved one to
live. At one time, about 1,200 people were crammed into a
facility built for around 300. People slept on cots and
sometimes went hours without attention. Faye Arrington remembers
it "smelling like an institution." Even the assistant
superintendent admits that the only windows that existed were
slits placed so high on the wall that residents couldn't
possibly see out of them. If the facility were like this today,
there would be no question about the need to shut it down.
To help ease overcrowding, two other Arizona Training Program
centers opened. One in Tucson could hold 200 people. Another in
Phoenix, which came to be known as the McDowell facility,
accommodated 145.
Though the new facilities went up in the early '70s, an
anti-institution sentiment had been brewing since the '60s.
Thanks in part to the civil rights movement, a shift toward
community integration began. It's an idea still alive today,
though it's not always fully realized in some communities. Even
when it is, it isn't always properly implemented (see "Arrested
Development," February 18).
In the '70s, the President's Committee on Mental Retardation
worked to end institutionalization and, as the conditions at
many facilities came to light, people started to keep loved ones
out of them.
In 1979, the Arizona Legislature followed the trend and decreed
that no one could be newly admitted to ATPC. The push toward
community integration in Arizona had begun.
Those were optimistic times for the disabled-rights community.
John Hinz, a former director of the Governor's Council on
Developmental Disabilities, a well-known activist, and proud
father of Missy, a 30-year-old with Down syndrome, remembers
those years well.
Hinz now runs a recycling business that employs developmentally
disabled adults. He pays them minimum wage — sometimes more —
which is much more than they'd make in an adaptive workshop.
Since his daughter was born, he's worked tirelessly to learn
everything about Down syndrome, everything about the rights of
disabled people.
"I've been in it for 30 years. I was a total optimistic idealist
30 years ago with my daughter. She was going to have every
opportunity, and she did. She's my pride and joy," he says. "But
all the promises [about supports and community integration] made
have not happened."
For one thing, though there's been a push to move people out of
institutions, group homes haven't always been better. Brian
Abery is a community-integration specialist at the University of
Minnesota. He is strongly against keeping places like Coolidge
open, but acknowledges that an institution can come in any size
— including a small group home.
Abery has worked to close down state-run Intermediate Care
Facilities for the Mentally Retarded in his home state, but he's
done so via a person-based planning method that is uncommon
elsewhere in the country.
"You can't think about just closing it down," he says. "You have
to think about working with individuals to find a place that
meets their needs and goals."
An essential part of meeting those needs is having enough staff
to handle individualized plans for each person and the resources
to make sure people go the best possible place, not just the
first open bed.
Hinz doesn't think we're there yet.
"In a perfect world, we wouldn't need Coolidge," he says. "There
would be enough money to [care for a disabled person]
one-on-one."
But there isn't. And that's why, even though he was instrumental
in closing down the McDowell facility, Hinz has changed is mind
and is now fighting to keep ATPC open.
His daughter was among the first generation of developmentally
disabled children who were promised a life of opportunity. Missy
is a shining example of what the new generation of disabled
children has been able to accomplish with support. She grew up
in her parents' house and now lives part time in an adult
developmental home and comes home on the weekends. She works
full time for her dad. When she was younger, she was the poster
child for The Arc, a national advocacy organization for people
with cognitive disabilities, and she graduated from a regular
high school.
Then Missy grew up. So did thousands of others like her. They're
getting old and, says Hinz, we're not ready.
"I'm faced with the realities those [Coolidge] parents are faced
with. Missy will never get bigger or better. We have no
long-term programs," he says. "We don't have a place. We don't
have a resource."
So Hinz understands and supports the push to keep Coolidge open.
There are plenty of people who don't.
The Arc is an advocacy organization strongly opposed to
facilities like Coolidge.
Joe Bonanno, the director of The Arc of Arizona, says the people
at Coolidge deserve the right to choose where they live and
work. (Sadly, it's a moot point for the many Coolidge residents
who are not mentally capable of making such decisions.) He says
he has no doubt people are well taken care of at ATPC but also
says that's not the point.
"It's a nice place to visit, but I wouldn't want to live there,"
he says.
The Governor's Council on Developmental Disabilities also says
it's in favor of closure if the state provides adequate funding
to make the transition and promises the money from the land sale
will go back to help people with developmental disabilities.
(The land can't be sold until 2013.)
Groups such as the governor's council and The Arc often cite the
Supreme Court's 1999 "Olmstead Decision," which says states have
to put people into community placements with reasonable
accommodations when appropriate in order to comply with the
least-restrictive setting mandated by the Americans with
Disabilities Act.
But, the court also said the state could not force a community
setting on people who didn't want it and conceded, "For others,
no placement outside the institution may ever be appropriate."
Olmstead was an important decision. It gave people the legal
tools to demand community supports — but it didn't automatically
mandate the closure of facilities like ATPC. The residents and
their guardians still have a choice.
But in the case of most ATPC residents, the guardians are the
only ones capable of making any choices.
Take the Arrington twins. There is a world of difference between
them and a person with mild cerebral palsy who lives with
support in the community. Darrell and Dorrell have moments of
alertness in which they can make eye contact when spoken to, but
spend a lot of time appearing catatonic. They never learned to
speak or sit upright. They can smile at each other and on a good
day can push buttons on a child's toy.
But their mom says that's just about all they can do. They could
never realistically decide what to eat for dinner or how to
spend the afternoon.
Not everyone at ATPC is that limited, but they are the exception
to the rule. The kitchen specializes in cooking puréed meals for
residents who can't eat without choking. The head chef has
devised molds so that the mushy food he serves to those
residents looks like food. There's a mold to shape the pea-mush
into peas, or create a pork chop out of what looks like darkened
mashed potatoes. (If a resident is ever unhappy with his or her
food, the kitchen will make something else.)
While Darrell and Dorrell have never lived off-campus, it's hard
to imagine a group-home provider taking better care of them.
Their older sister thinks they'd probably be dead. At least she
knows they're safe at ATPC, and she adds that they are part of a
community. They have their little sister, they have each other,
and they have caregivers whom they've known for years.
"It's a campus facility. They are free to go — the ones who are
mobile — from cottage to cottage. They have barbecues, invite
neighbors over. There are boyfriends and girlfriends. It's a
family," she says. "It's not an institution. I really resent
that."
On a day in early March, it certainly doesn't feel like one.
At midday, the Coolidge residents are all at work or therapy.
For those who've reached retirement age, ATPC has created a
program to suit their needs.
Residents who can work, do. They earn money by sorting nuts and
bolts for a garage door company in Phoenix. ATPC makes sure to
accommodate everyone in the workshop according to need — one man
who has a history of bed sores has a wheelchair adapted so he
can lie down to work, and the staff repositions him often.
At an on-site adaptive workshop, one older woman is having a new
wheelchair molded for her. A physical therapist is present, as
is a nurse, and they position her just so. Next, the master of
the shop — a woman who's worked at ATPC for more than 30 years
and knows the contours of each resident's changing body — begins
the pour.
A pink liquid fills the space between the woman's body and the
back of the chair. It fizzes up behind the plastic that protects
her from getting dirty and turns to foam, then hardens. When the
chair is done in a couple of days, it will be upholstered and
fitted to the contours of the woman's body. It's a great
service, and one used often. Almost 50 percent of the population
here needs a chair.
In a therapy room, one of the Arrington twins is positioned in a
recliner designed to help him stretch. Around him, the lights
are low. Being inside the room feels a little like being at a
rave — there are flashing lights, lava lamps, and
glow-in-the-dark decorations hung at every angle. No matter
where Arrington or the other five people in the room look, there
is something to keep them visually stimulated.
More than 100 of the people who live here are diagnosed with
severe or profound disabilities, and therapy like this is how
the staff keeps them active. No one spends all day in any one
room. They all go to work, their retirement program, or therapy
every weekday.
A tour of several of the living cottages reveals clean quarters,
where most clients have their bedrooms decorated however they
want (Spider-Man is popular here). Each room feels
individualized with photos, some over 50 years old, of family
members, and personal belongings such as china dolls (in a glass
case) purchased for the residents. The facility just bought a
$10,000, high-tech bathtub to help caretakers bathe their
fragile clients. One cottage is outfitted for the
sight-impaired. Three-wheeled bikes are parked outside others.
In the living room of one of the homes, a woman named Margie
sits at a piano. Margie is thought to have autism, though no
diagnosis was made when she was a little girl. If she'd been
born today and treated with modern methods, her life could have
been much different, staffers say.
Margie is probably a genius. She reportedly started playing the
piano by ear when she was 2. She can play any song after hearing
it once, the staff says. She has a piano at ATPC, but she wants
a new one. Hers isn't tuned right, Margie says. The family and
friends support group is saving to buy her a replacement.
On that same March afternoon, Margie sits on the bench, fingers
poised on the keys. She has quite an audience today — five
strangers on a tour and a few familiar faces. She grins and
settles in to play.
As her audience quiets down, Margie presses the keys. The song
is "Amazing Grace," and she performs every verse perfectly.
In light of how familial ATPC feels, it's easier to understand
why parents, guardians — and some others — are so insistent it
stay open.
Elliot Gory, the psychologist who has worked part time at
Coolidge for 30 years, says the clients here are safe. He
wonders if it might damage them to move so late in life.
"I get into every nook and cranny. The staff is caring, gentle,
and they're skilled. I talk with staff who have known the client
I'm working with for 20 years," he says. "There's always the
risk of trauma if you relocate someone who is older. There are
negative health effects and on top of that, these are people
with developmental disabilities who are not resilient. They have
difficulty accepting change."
A visit to Hacienda de Los Angeles, the only other large
Intermediate Care Facility for the Mentally Retarded in the
state, shows a place similar to ATPC. It's newer; one wing was
just completed last year. It's also a lot smaller. The facility
near South Mountain has 60 beds; 39 are full.
Residents at Hacienda all share bedrooms, most of which are
considerably less personalized than the rooms at Coolidge,
though no less efficient. The age range at Hacienda is different
as well; it has residents as young as 6 and is equipped to take
care of babies.
In the early afternoon, all residents are split into small
groups to listen to music and work on arts and crafts. The
facility has a playground adapted so that even wheelchairs can
be placed on the swings. There's a pool, and a local Kiwanis
club funded the construction of an apartment where family
members can stay when visiting.
Aside from the location and the number of beds, it's not much
different from Coolidge. But no one is trying to shut Hacienda
down.
Hacienda's executive director, Bill Timmons, has led the effort
at the Legislature to close ATPC.
"I don't think the Coolidge staff are mistreating the residents.
I believe their heart is in the right place," he says. "But I
also don't believe these Arizona citizens should have to live in
a place that's not a community. Secondary to that, it costs so
much money."
He does make some good points. Though the core staff at Coolidge
has been there a long time, only 12 full-time nurses work there.
Timmons, who runs a nurse-registry service, says that's not
enough. His registry provides nurses to ATPC sometimes, and he
says they often have a hard time covering the third shift and
weekends.
He may be biased, but there is some truth to what he says. He
also points out the state Department of Health Services
licensing violations that ATPC has accumulated over the past few
years, even going so far as to put them in a binder for a
reporter (though he didn't provide the same information on his
own facility).
On the surface it appears to be a lot. Some of the violations
are mundane: a door wedged open with a dustpan or too much dust
on the fan blades. Some are important but not life-threatening:
a resident being fed instead of being encouraged to feed
himself, for example.
But others are less disturbing if you know the backstory. In a
November 2007 report, DHS inspectors found that the facility
"failed to monitor three individuals' fluid intake and output,
bowel movements, and failed to provide medical studies (colon¬oscopy
for one individual). Individual numbers 2, 6, and 14
subsequently required hospitalization."
In fact, "Individual 14" died in the hospital.
But the stories the family members tell reveal more than the DHS
reports.
"Individual 2" in the DHS report — the one who did not get his
colonoscopy and was hospitalized for dehydration — is Dorrell.
His mother and sister actually refused the procedure for both
brothers, feeling it was too invasive for their delicate bodies
to handle.
They also say they know the woman who died.
They don't trivialize her death, but they also known she was
quite old and was riddled with arthritis.
After careful review of the report, the line between neglect and
natural death is blurry. ATPC was cited for failing to provide
adequate physician care, but not for abuse or neglect.
The death of "Individual 14" was the only death cited by DHS in
reports dating back to 2005, which is remarkable, considering
the average age of the Coolidge residents (most are in their
late 50s) and their relatively diminished life expectancy. There
are no deaths mentioned that resulted from neglect. That is not
the case in Arizona's group homes. In 2007, at least two men
died as a direct result of incompetent caregivers: One choked to
death on a burrito in front of his attendant; the other hit his
head on a wall, with the knowledge of his caregiver, and
suffered a brain hemorrhage in bed that night.
Hacienda also has been citied for everything from violating fire
codes to violating protection of a client's rights. There are
examples of clients who were not positioned correctly for their
feeding tubes, or who were not getting enough oxygen.
The similarity between ATPC and other facilities is one that
hasn't come up in the Legislature. Of course, one facility is
private; the other is run by the state, but according to Brian
Abery, of the University of Minnesota, an Intermediate Care
Facility for the Mentally Retarded is an institution no matter
how you slice it. (For the record, Abery is against nursing
homes, too.)
From Abery's perspective, if one has to close, the other does,
too.
Much of the focus remains on ATPC's past, and the fact that it
is "isolated" from society, as Timmons puts it. It sits in the
center of the fastest-growing part of the state.
Deb Henretta, whose brother Vinnie has lived at the facility
since he was 15 (he was injured in a car accident), wishes the
argument could move beyond whether or not Coolidge is an
institution and shift toward finding a way to tap what she sees
as an underused resource.
"ATPC serves individuals with the greatest needs and complex
medical conditions," she says. "ATPC could fill that need for
elderly individuals who have special needs."
In 2002, the U.S. Surgeon General reported that people with
developmental disabilities are less likely to receive good
health care. Doctors just aren't trained to do it.
The report cites a need for places like Coolidge to figure out
how to provide adequate care for a growing population of
geriatrics with developmental disabilities, as well as find a
way to train healthcare professionals.
One facility, the North Virginia Training Center in Fairfax, is
mentioned in the report.
At a cost of $350,000 a year, it provides critical training on
how to care for an aging DD population. There are other centers
like it in Massachusetts, Kentucky, New Jersey, Washington
State, Florida, and Missouri.
In many ways, the Coolidge center already functions like a
nursing home and retirement center. There's even a chapter of
the Red Hat Society (a social group for women over 50 in which
members wear red hats and purple outfits to their gatherings) on
campus. The Red Hats of ATPC dress up in full regalia for their
meetings, just as any chapter would.
On posters around Margie's piano room (she's a Red Hatter as
well) pictures are displayed from a past meeting. The women are
shown looking at themselves, in their outfits, in handheld
mirrors. They all look happy with what they see. Another set of
pictures shows them gussied up and grinning at a Valentine's
dance sponsored by the Red Hat ladies.
In the sensory-therapy room, a place that might make an
uninitiated observer squeamish, there is an attendant for every
person. When a resident moans, his head is stroked gently. When
another laughs as she pushes buttons that make animal noises,
her caretaker laughs with her.
Across the compound, the retirement center also is busy with
activity. In a colorful room, filled with as many employees as
residents, one woman plays with blocks on the floor, while
another talks to her caretaker (she's concerned about her
waistline).
Sixty miles north of this center of activity, advocates,
legislators, and family members continue to struggle with how to
make the right decision about Coolidge. In the minds of family
members, one fact cannot be disputed: Their relatives have
survived long past their projected life spans. When these people
were born, they were taken home by parents who expected them to
die within a year.
And yet, here they are.
For Deb Henretta, that alone is reason enough to keep her
brother in Coolidge.
"We have nursing homes that care for our medically fragile
elderly folks. We have programs that offer services to children
with special needs. Remember, the children do grow up, they
become adults and age," she says. "There is a need now for
individuals with developmental disabilities that are aging.
Maybe ATPC could fill those needs."
--------------------------------------
Tamie Hopp
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