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| Sue Schnars braids daughter Ivana's hair |
Since 43-year-old Ivana Schnars moved into a nursing home in
Pflugerville, her mom, Sue Schnars, has tried to make it as comfortable
as the home where her daughter spent most of her life. Citrus essential
oil perfumes the dorm like room. Relatives have left sweet messages on a
white board. Pink decorations dot the walls.
Unable to care for
Ivana Schnars, who is nonverbal and uses a wheelchair, on her own, Sue
Schnars moved her out of their North Austin home in August.
Schnars
had trouble finding and keeping caregivers for Ivana. With the state’s
Medicaid reimbursement, she could pay personal attendants only $11 an
hour without benefits.
“I agonized over this decision,” Schnars
said. “She’s my daughter, and I love her. For 43 years, I kept her home.
For 43 years, I was able to make sure she was safe and clean and that
she had everything that she needed. People at the retirement home are
wonderful, but they’re not me.”
Schnars is using her daughter’s Social Security income to pay for the nursing home.
The
turnover rate among attendants is high across the country — 45 to 65
percent — but stagnant pay rates in Texas have worsened the problem
here. Attendants in Texas are paid on average $9.30 an hour, while the
nationwide average is $11.59, according to an August report by the Texas
Health and Human Services Commission.
For nearly a decade, the
state has not increased the payment rates of personal attendants in
Community Living Assistance and Support Services, the Medicaid program
that covered care for Ivana Schnars and 5,600 other Texans. The state
sets the attendant rate in the program at about $13 an hour, but after
administrative fees and payroll taxes are shaved off, the rate families
can pay attendants is lower.
Additionally, the state cut the
attendant rates of two other Medicaid programs for individuals with
disabilities — Texas Home Living and Home and Community-based Services —
by 21 percent last year to $17.73 an hour to align the rates with other
Medicaid programs. The decision affected caregivers for about 8,000
people in both programs. Dozens of people with disabilities and their
relatives had pleaded with the agency in a meeting last year to
reconsider the cuts.
The cuts saved the state $26.6 million over a
two-year period. Texas Home Living, which providers say has long been a
financially difficult program to run, has been hardest hit by the
cuts—19 providers have terminated contracts.
“On a business
level, you can’t do something where every month you’re not paying your
bills and you have to borrow from one program to pay for another
program,” said Doug Svien of the Company Rock House, a Stephenville
provider group that has stopped participating in the Texas Home Living
program. “Maybe somebody out there that can do it for less cost than I
can do it, and God bless them.”
Texas Health and Human Services
Commission officials said they’re working on improving retention and
recruitment in Texas, including asking the Legislature to raise the pay
for attendants. The agency estimates that it will spend $7.9 billion on
community attendant services during the 2020-21 budget.
“We know
long-term care providers in Texas have indicated they are facing
difficulties recruiting and retaining the qualified community attendants
needed to provide care. We are working to better capture data on
attendant turnover and retention, which can be used to help determine
effective strategies for improvement,” a statement from the agency said.
‘A really hard decision’
Ivana
Schnars was born in Peru, where her parents were social workers in the
1970s. She was developing normally until a vims attacked her brain,
leading to cerebral palsy.
Sue Schnars, who recently retired from
her job as a special education administrator for the Pflugerville
school district, had for years relied on attendants to feed her
daughter, read to her, change her clothes and take her on outings, among
other activities. More recently, she relied on them the most to help
carry her, something the 61-year-old can no longer do.
Amy Gayer
-Byles, Ivana Schnars’ caregiver for seven years, struggled to make ends
meet. A part-time Austin Community College student saddled with a car
note, Gayer Byles would forgo doctors’ appointments and often not use
electricity in her apartment and skip meals to pay her bills. Although
she loved Schnars — it’s evident by a scrapbook she made of their time
together that now sits in Schnars’ room at the nursing home —
Gayer-Byles needed to support a family, so she quit.
“That was a really hard decision,” Gayer-Byles said.
“There’s
no other words,” Gayer-Byles said through tears. “You’re talking about
real people. These are families. They’re struggling to live a day-to-day
life, and more and more hurdles are being put in front of them. It’s
just unbelievable.”
After Gayer-Byles left three years ago, four
caregivers followed. One couldn’t live on $11 an hour. Another would
bring her personal drama to work, Sue Schnars said.
“I had taken
out ads through Care.com. I did Craigslist,” Sue Schnars said. “There
were plenty of people who responded to my ads, but when I told them how
much I could pay, they were like, no way. And the responses always were,
‘I can’t rent an apartment and live in Austin for 11 dollars an hour.’”
Texas has the second-highest number of personal attendants — 196,790,
according to a report by the Texas health agency. Personal attendants
will continue to be in high demand across the country because of an
aging population and lowpay that has led to high turnover, according to
the U.S. Bureau of Labor Statistics.
According to an email
Schnars received from the Texas Health and Human Services Commission, an
official said: “You are not the first person reporting this issue.
Austin seems to have its extra challenges with the relatively high cost
of living, but rural areas seem to have staffing issues as well.”
QT Preston makes $12 an hour working part-time as an attendant, reduced by $1 as a result of recent state cuts, she said.
Preston,
who also works as a behavioral therapist, said it would be impossible
to live off that wage in Austin without juggling another job.
“Attendants
should be paid way more because there is such a need in these
individuals’ lives. They help the family as a whole because they give
parents a much-needed break and an overall improvement of life for
everyone involved,” Preston said. “A role of an attendant has been
downplayed.”
Austin resident Jane Ayala, 72, makes $9 an hour
working 14 hours a week with a disabled adult client who is on a
Medicaid waiver program.
She takes her client to work at Chuck E.
Cheese’s three days a week, picks her up, has lunch with her and takes
her to activities. Aprivate agency pays Ayala $9 an hour.
“It
probably covers gas and to have lunch with her, ” Ayala said of her pay.
“I just love people, and I know that they need a break.”
‘Chasing nickels’
The
state offers Medicaid services to people with disabilities through
waiver programs. Home and Community-based Services and Texas Home Living
programs serve people with more severe intellectual disabilities than
the Community Living Assistance and Support Services program.
Personal
attendant services covered through these Medicaid programs are meant to
keep people with disabilities in their own homes, where they can either
learn to be independent or rely on family to help them.
Staying
at home not only is preferred for the well-being of the individual but
also is less expensive for the state than paying to live in a group home
or some other facility.
When the state proposed the rate cuts in
2017, about 50 people showed up to a hearing to protest the cuts. They
said the cuts would force attendants to find jobs in retail and fast
-food restaurants that pay comparably but require fewer skills. They
said the state’s most vulnerable people would be in danger because their
families would be forced to turn to low-quality attendants.
Employers of these attendants said there is a chronic shortage of staff.
“In
the Central Texas area, you can work at Whataburger and get a rate
higher than what some are receiving as far as salaries. When we try to
find persons we can afford, it’s very difficult to find the quality that
we’re looking for for the families we serve,” said Andrea Richardson,
executive director of Round Rock-based Bluebonnet Trails Community
Services. Bluebonnet Trails also was affected by the cuts.
Daybreak,
a large provider, this year ended all but one of its Texas Home Living
contracts, according to the state health agency.
“Before this
rate reduction happened, providers had already been dropping out of
Texas Home Living because rates had been slashed so many times already.
This latest one was the icing on the cake,” said Sandy Frizzell Batton,
executive director with the advocacy group Providers Alliance for
Community Services of Texas.
Robert Ham with D&S Community
Services, which operates in Austin as well as cities in other parts of
Texas, Tennessee and Kentucky, said participating in Texas Home Living
is a financial wash for him. Similar employees at state-supported living
centers for people with disabilities make 40 to 60 percent more, he
said.
“I’ve been in this business because it’s my passion to
provide these services,” Ham said. “It’s always looked at as the state
is just giving providers more money. It’s not that way. We’re chasing
nickels. ” State health agency officials had dropped the rates in
preparation for shifting these Medicaid waiver programs into managed
care, part of a massive transition of Medicaid services mandated by the
Legislature. Under managed care, the state contracts with private
insurance companies and hospitals to administer services, saving the
state money; critics of the model say the private companies, called
managed care organizations, have denied care for people to save money.
A
Medicaid program for children with disabilities has for the past few
years been under managed care, and over that time, hundreds of parents
have complained about the managed care organizations unjustly denying
critical services for their vulnerable children.
The Health and
Human Services Commission is required to release a report annually on
the status of personal attendant services in the state as well as
recommendations on how to improve retention and decrease turnover. The
agency’s August report to the Legislative Budget Board and to the
governor’s office recommended increasing the wages of attendants, as
well as improving recruitment through local workforce development;
creating a state workforce development plan to improve retention and
recruitment of attendants; requiring employers of attendants to provide
attendants with information about a federal program that offers low-cost
child care; increasing training for attendants to improve job
satisfaction; and allowing attendants to live with their clients so that
family members can become attendants and be paid an attendant wage.
“I
agonized over this decision. She’s my daughter, and I love her. For 43
years, I kept her home. For 43 years, I was able to make sure she was
safe and clean and that she had everything that she needed. People at
the retirement home are wonderful, but they’re not me.”
Full Article & Source:
DISABLED ADULTS FEEL MEDICAID PINCH
“Supported
Decision-Making: Theory, Research, and Practice to Enhance
Self-Determination and Quality of Life” comprehensively examines
supported decision-making and how it can be applied in policy and
practice for people with intellectual and developmental disabilities.
Published by Cambridge University Press, the text was authored by Karrie
Shogren, professor and senior scientist and director of the Kansas
University Center on Developmental Disabilities; Michael Wehmeyer, Ross
and Mariana Beach Distinguished Professor in Special Education and
director of the Beach Center on Disability; and Jonathan Martinis and
Peter Blanck of the Burton Blatt Institute at Syracuse University, New
York.
“Supported
decision-making is receiving increased attention in the U.S. and
internationally. Essentially, it’s all about providing alternative
models to plenary guardianship that can enhance self-determination and
quality of life,” Shogren said. “The wholesale removal of legal rights
under traditional plenary guardianship modes can be problematic, and we
need alternatives that fully engage people with disabilities in
decisions about their lives.”
The
text summarizes research in supported decision-making and practical
applications both within the United States and from other countries. The
book highlights ongoing research to develop intervention and assessment
strategies to enable support decision-making in practice. The legal
section gives an outline of the frameworks to establish supported
decision-making as an alternative to legal guardianships. Examples of
legislation in various jurisdictions, including Texas and Delaware, are
highlighted.
