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VOR Weekly E-Mail Update
August 4, 2006
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1. About this Issue -- A Focus on Access to Health Care
2. Article assesses satisfaction with primary health care of
families of
children with developmental disabilities
3. CMS takes steps to improve coverage and sustainability of
care for
dual-eligible beneficiaries
4. Massachusetts: Clinicians in short supply among DMR
providers; DMR
report provided under Public Records request
5. California: Nursing Crisis Averted, plus background
6. Access to health care: A "complicated dance" of care
7. Resources relating to the Health Care Crisis -- Studies from
Special
Olympics, Surgeon General and NPR
8. PLEASE SUPPORT VOR - JOIN OR CONTRIBUTE TODAY. A membership
form is
included at the end of this Update, or www.vor.net.
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1. About this Issue -- A Focus on Access to Health Care
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Last week, VOR reported that Senator Harkin introduced federal
legislation
"to improve Medical Access for People with Disabilities." Upon
introduction
of S. 3717, Senator Harkin stated, "We must recognize the unique
situation
of individuals with disabilities and work to make certain they
are not
limited in their access to quality medical care, or in their
opportunities
for health and wellness . . . We want to set standards, ensure
proper
funding, and make certain that medical professionals receive the
appropriate training so that they can provide the best quality
care for
all." See
http://harkin.senate.gov/news.cfm?id=259314
VOR is still studying the specifics of Senator Harkin's bill,
but we
wholeheartedly support its intent. In June, VOR called on all
members of
Congress to consider legislation to enhance access to quality
health care
for people with mental retardation. See
http://vor.net/HealthCarePosition.html.
The following collection of articles is further evidence of an
existing
crisis and the need for the advocacy and professional community
serving
people with developmental disabilities to quickly and
collectively address
this issue.
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2. Article assesses satisfaction with primary health care of
families of
children with developmental disabilities
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Source: Monday Morning in Washington, DC
Volume 06, Issue 31
July 31, 2006
Published by The Arc of the United States
"Evaluation of the satisfaction levels expressed by families
imparts
important information that may be used to enhance the way care
is provided
to families and children," write the authors of an article
published in the
July 2006 issue of the Journal of Pediatric Health Care.
Children with
special health care needs (CSHCN) have complex medical needs.
Patient
satisfaction is an important measure of quality of care. The
purpose of the
study described in this article was to evaluate the perceptions
of families
with a child with special health care needs regarding their
primary care
physicians and to determine whether differences exist for
families who have
children with different conditions.
The survey sample included children who were currently receiving
services
at the Kirsch Developmental Services Center, Golisano Children's
Hospital,
University of Rochester Medical Center. This program provides
care to
children who have physical disabilities such as spina bifida and
cerebral
palsy, as well as developmental disabilities such as autism and
mental
retardation. Surveys were mailed to 300 families. A total of 121
surveys
were returned for a corrected return rate of 44%.
The authors found that:
* Thirty-three percent of the sample rated primary care
physicians'
ability to put them in touch with other parents as fair or poor.
* More than 20% of the sample rated physicians as fair or poor
on the
following items: (1) understanding the impact of the child's
condition on
the family, (2) ability to answer questions about the child's
condition,
and (3) information and guidance for prevention.
* Physicians' knowledge about complementary and alternative
medicine and
their qualification to manage developmental disabilities ranked
worse than
neutral.
* Families rated physicians highest on their ability to keep up
with
medical skills and knowledge of new things and about their
caring more
about the needs of children than about what is convenient for
the
physicians.
* Families with a child with autism rated physicians' ability
to answer
their questions regarding their child's condition worse than
families with
a child with physical disabilities or mental retardation.
Families with a
child with autism also rated physicians worse on their ability
to
understand how the child's condition affects the family.
* Families with a child with autism were more likely than
families with a
child with physical disabilities or mental retardation to
disagree with the
statement that most doctors are well qualified to manage medical
conditions
like their child's. Families with a child with autism also rated
physicians
worse on their knowledge of complementary and alternative
medicine.
The authors conclude that "concerns identified by families may
be addressed
by care practitioners. Particular attention may be given to
those
variables, some disability-specific, that affect quality of
care."
Liptak GS, Orlando M, Yingling JT, et al. 2006. Satisfaction
with primary
health care received by families of children with developmental
disabilities. Journal of Pediatric Health Care 20(4):245-252.
Abstract
available at
http://www.jpedhc.org, the in the search window, choose to
search "Periodicals" and then enter the title in quotes,
"Satisfaction With
Primary Health Care Received by Families of Children With
Developmental
Disabilities."
Here is the direct link:
http://www.jpedhc.org/article/PIIS0891524505004980/abstract?browse_volume=2
0&issue_key=TOC%4
0%40JOURNALS%40YJPHC%400020%400004&issue_preview=no&select1=no&select1=no&v
ol=
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3. CMS takes steps to improve coverage and sustainability of
care for
dual-eligible beneficiaries
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Source: Monday Morning in Washington, DC
Volume 06, Issue 31
July 31, 2006
Published by The Arc of the United States
To encourage people to make better plans for their future
long-term care
needs, and to protect the stability of the Medicaid program, CMS
today
announced a set of important steps to keep coverage secure and
improve care
and coverage options for people with Medicare and Medicaid.
These policies include new incentives for people to buy private
long-term
care insurance, improved rules governing the transfer of assets
to prevent
inappropriate use of taxpayer funded programs, and improved
coordination of
care for those with both Medicare and Medicaid coverage, the
so-called
"dual eligibles" who are in managed care plans.
To view the entire press release, please click here:
http://www.cms.hhs.gov/apps/media/press/release.asp?Counter=1911
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4. Massachusetts: Clinicians in short supply among DMR
providers; DMR
report provided under Public Records request
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Clinical professionals such as registered nurses and licensed
psychologists
are in short supply in provider- run residents for persons with
mental
retardation, according to a survey done for the Department of
Mental
Retardation.
The survey, done by the Center for Developmental Disabilities
Evaluation
and Research (CDDER), was obtained under an appeal by COFAR to
the state
Public Records Division.
CDDER, which is associated with the E.K. Shriver Center at the
UMass
Medical School, reported that less than half the provider
agencies surveyed
in five regions across the state employed nurses for care of
residents in
group homes or for other services. In the Metro Boston region,
only 28
percent of surveyed providers had a registered nurse on staff;
only 11
percent had a licensed practical nurse; and only 1 percent had
any advanced
nursing services.
For agencies that did not have RNs paid for through DMR
contracts, more
than half used non-clinical staff to perform health coordination
activities.
"This is yet more evidence that the community-based system of
care for
persons with mental retardation remains under-funded and
understaffed,"
said COFAR Executive Director Colleen Lutkevich. "The community
system is
simply not equal to or better than the state facilities."
A call to DMR Commissioner Gerald Morrissey's office for comment
on the
report was not returned.
The reports stated that RN and LPN nursing responsibilities
include nursing
care, clinical assessments and consultations, coordinating care
for
individuals, and training of direct-care workers to administer
medications.
Advanced nursing services include medication evaluation and monitoring,
emergency response and crisis management, and psychiatric
assessments and
evaluations in addition to nursing care.
The CDDER report also stated that less than 20 percent of
provider agencies
in each region employed Master's level psychologists or
behavioral
specialists in providing any type of care. Responsibilities for
those
professionals include behavioral screening and development of
behavior
plans, counseling, and training of direct care staff and
emergency response
and crisis management.
The figures were even lower for licensed psychologists, with
only 2 percent
of agencies in some regions using them for care, according to
the report.
Responsibilities for licensed psychologists include creating and
monitoring
psychological treatment plans, training and support for
direct-care staff,
and evaluations, psychological screening and counseling.
In addition, less than 5 percent of surveyed provider agencies
in each
region employed a psychiatrist for any type of care, and no
agencies in
the cwentral or northeast regions employed psychiatrists.
Responsibilities
of psychiatrists include development of treatment plans,
psychological
assessments and diagnoses, training of direct-care staff, and
emergency
response and crisis management.
The CDDER survey covered a total of 296 provider agencies. Data
was
collected for the period from 2002 to 2003.
The CDDER report stated that DMR had asked for a clinical
resources
capacity study using data from DMR contract files. The original
design of
the project had called for surveys to be sent directly to each
provider
agency. However, DMR determined that its own area and regional
staff had
sufficient knowledge to complete the surveys themselves, the
report stated.
As a result, CDDER sent survey questionnaires to all area and
regional DMR
offices about contracted clinical resources in provider agencies
in their
area or region. Inconsistencies were reported between
information in the
DMR contracts database and current staffing in the agencies.
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5. California: Nursing Crisis Averted, plus background
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Summary: The following article details a recent nursing crisis
had been
plaguing California Developmental Centers. Central to this
crisis was the
enormous pay inequity between state nurses at developmental
centers and the
nurses at state correctional and mental health centers that came
about as a
result of a court decision, and not state policy or bargaining
action. The
crisis was especially pronounced at State Developmental Centers
that were
located near State Correctional Facilities. At Sonoma
Developmental Center,
for example, at least 15 Sonoma nurses quit in favor of an 18%
raise
($1,000 more per month) by working at nearby Napa, Vacaville, or
San
Quentin correctional facilities.
Late breaking news, however, indicates that due to a Department
of Justice
intervention (due to the impact this nursing exodus was having
on resident
care), developmental center nurses are now receiving pay closer
to, or
equal to, correctional center pay. For now, the crisis has been
averted.
CASHPCR weights in on nurse issue
The Eldridge Gazette
June/July 2006
In a June 1, 2006 press release, the California Association of
State
Hospital Parent Councils for the Retarded (CASHPCR) raised
concerns that
developmental center clients are the potential victims of
stalled labor
contracts for state nurses. CASHPCR President, Terry DeBell says
that
without a satisfactory resolution on the state contracts for
nurses,
clients in the developmental centers will unintentionally suffer
grave
consequences.
At issue is an enormous salary inequity between state nurses in
developmental centers and nurses working at the state's
correctional and
mental health centers, which could seriously jeopardize the well
being and
safety of our most vulnerable citizens.
Nurses employed by Mental Health and Corrections received a
large salary
increase due to 2 lawsuit settlements that focused on inadequate
medical
services and other critical issues. The 18 percent recruitment
and
retention increase was mandated to improve those services.
However, the
medical care delivered at Developmental Centers has not been the
subject of
the a lawsuit, so this increase has not been extended to the DC
nurses.
This salary discrepancy is more acute due to the fact that the
present
nursing salary at the DCs may be 30% less than what is offered
in the
private sector. The Sonoma DC has been more acutely affected
than the other
4 DCs statewide because of its proximity to Napa State Hospital.
Despite the preference of the nurses to continue serving persons
with
developmental disabilities, many nurses have expressed that they
must heed
their personal financial obligations, and have transferred or
are preparing
to transfer to nearby state facilities that now offer the
augmented salary.
This leaves the residents, who depend on the nursing staff for
their very
lives and quality thereof, at great risk. As family members of
individuals
with a developmental disability, we are very concerned about the
impact
this will have on the DC residents. The loss of adequate nursing
staff can
lead to many serious problems with administering medications and
providing
professional care which only skilled nurses can provide.
Decreasing the nursing staff may also lead to problems meeting
licensing
standards and affect federal reimbursement for the care of the
DC
residents, at present 49.5% of the total cost.
There is a critical nursing shortage throughout the country.
Allowing a
drain of nurses from the Developmental Centers to other state
facilities, a
drain caused by an extreme salary differential, is not the
answer and will
make this shortage even more serious at the developmental
centers. This
situation needs immediate attention in order to prevent serious
harm to our
most vulnerable population.
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6. Access to health care: A "complicated dance" of care
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Copyright © 2006 The Seattle Times Company
By Cara Solomon
Years ago, before Madison Williams made friends, played baseball
and went
to camp, a doctor looked at scans of her brain and said: No
chance. No
chance she would become a normal first-grader.
The doctor said other things to her mother, Lawrie Williams, who
lives in
Seattle. But it was the phrase "no chance" that stuck.
"Here it is, 10 years later, and I have that quote embedded in
my brain,"
said Williams, whose daughter suffered a stroke in the womb. "It
really has
staying power with me."
When parents find themselves in the strange new world of
developmental
disabilities, they often regard doctors as their guides. Every
word weighs
heavy, setting the tone for how parents see the future.
Some doctors have a natural gift, experts say, and need little
training.
But many are frustrated by the ambiguity of the situation; there
are no
easy, ready answers to give parents about their child's future.
The origins
of developmental disabilities like Down syndrome or autism are
still being
researched.
"I think what can be intimidating for physicians is all of the
unknowns,"
said Wendy Sue Swanson, a pediatrician in Seattle.
There was a time when the parent-doctor relationship was not as
critical to
children with developmental disabilities. As recently as a few
decades ago,
many of the children were separated from their parents and put
in
institutions.
But with medical advances, and a shift in societal attitudes,
more children
with developmental disabilities are living at home, in the care
of their
parents. Their health needs are significant. And because they
can't always
articulate what's wrong, or manage their own medical care,
experts say it's
critical that parents and doctors work together to help them.
Parents know what is "normal" behavior for their child, and what
is not.
And doctors have the medical knowledge needed to address
problems. The
goal, experts say, is to make them partners.
Building a bond
Programs at the University of Washington and Children's Hospital
& Regional
Medical Center have focused for years on strengthening the
relationship.
They teach pediatric residents in particular everything from how
to listen
to parents to how to walk that fine line, between giving too
much hope to
parents and not enough.
The learning curve for some is steep. Often, doctors are wary of
giving
false hope. Sometimes they rely too much on medical textbooks,
glossing
over the fact that each child is different. And then there is
the pressure
of facing parents, who are not always ready to hear bad news.
"It's really a complicated dance," said John McLaughlin, a
professor of
pediatrics at the University of Washington.
For their part, parents are often embarrassed to ask questions.
They are
worried they will come across as pests. They assume the doctor
knows how to
deliver sensitive information when often parents do not yet
know how they
would like to receive it.
It was tough for Michele Lehosky in the beginning. She was a shy
woman, and
reserved. But having a son with Down syndrome has made her
vocal, and
confident in a way she could not imagine herself before.
"Kyle has taught me that I need to speak up," said Lehosky, of
Gig Harbor.
"Because he doesn't have a voice."
For all the doctor training, advocates say, parents must also do
their
part:
* Document any health problems in a diary.
* Bring a list of questions to doctor's appointments.
* Ask if you don't understand the plan.
* Get the doctor's notes if needed.
* And shop around for the kind of doctor you want.
This is the advice Lehosky gives, now that she is a coordinator
for the
parent-to-parent support program at Washington PAVE, a parent
resource
center for families of children with developmental disabilities.
For her own son, Lehosky wanted a physician who would involve
the teenager
in all conversations about his health. A doctor who would see
Kyle as a
person, not a problem to be solved.
She found him at Group Health.
"He's that quiet doctor who just listens, and if he doesn't
know, he says:
'I'll get back to you,' " said Lehosky. "And he does."
Getting another perspective
In the push to make parents their partners, the medical
community has often
asked them to teach.
At Children's Hospital, pediatric residents are paired with
families for a
few hours, to get a glimpse of what life is like for children
outside the
hospital. They follow whatever the family routine is that day,
whether it's
going to church or watching a baseball game.
Swanson, who recently completed her residency at Children's
Hospital, spent
time with a family whose son could not speak, or move without
help. It was
so nice to see the boy at home, where he was comfortable, and in
good
health.
"We so rarely have that window," she said.
Those few hours give residents the chance to see parent
expertise at work,
said Lyn Kratz, the social worker who runs the program. So many
come away
from the day in awe of how resourceful the families can be.
For the parents, she said, it's a chance to share practical tips
and words
of wisdom. They tell stories to the physicians of the future,
about how
doctors have helped them in the past and how they have
sometimes hurt.
"Just by telling, it's healing," said Kratz. "But they get the
added
benefit of knowing it might make a difference."
For Williams, it was a chance to show residents that her
daughter Madison
is more than the sum of her medical problems. That she is a
laugher at the
smallest of things. A caretaker of her family. A determined
student of
everything from reading to riding a bike.
"If they haven't had that exposure," Williams said, "doctors
decide based
on what's written on a page."
Training programs are key
As early as the 1960s, parents demanded greater expertise from
their health
professionals and they got it, in the form of dozens of
federally funded
training programs .
The UW hosted one of the programs, now called LEND, or
Leadership Education
in Neurodevelopmental and related Disabilities. Pediatric
residents are
required to go through the training now. Among other things,
they learn to
listen first. And then ask the question: What do you need?
Over the years, McLaughlin, the program director, has seen real
progress in
the way pediatricians treat their patients with developmental
disabilities.
But he said there is not enough training for the other
specialists who
treat those same children.
And the field changes so fast. When Kyle was born, small and
purple and
struggling, Lehosky's pediatrician painted a bleak picture for
his future.
His life would be short, the doctor said, and difficult.
But Kyle pushed past those predictions. He won an art award, got
a letter
from the president, earned a jacket for his community service. A
few
Sundays ago, he walked the graduation stage at the Tacoma Dome,
with all
the other kids his age.
"Beyond the condition, he has still made rites of passage,"
Lehosky said.
"He did it his own way."
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7. Resources relating to the Health Care Crisis -- Studies from
Special
Olympics, Surgeon General and NPR
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A. Special Olympics Health Research References
[If any of these longer links don't work, go to
http://www.specialolympics.org, and search by the title of
the article or
study].
Special Olympics Research Reveals that People with Intellectual
Disabilities are Forgotten in the Health Care System, August 9,
2005 Press
Release:
http://www.specialolympics.org/Special+Olympics+Public+Website/English/Pres
s_Room/Press_Release_Archive/2005+Press+Release+Archive/People+with+intelle
ctual+disabilities+face+health+care+challen ges.htm
Changing Attitudes, Changing the World
The Health and Health Care of People with Disabilities
Special Olympics
http://northamerica.specialolympics.org/research/documents/CACW_Health.pdf
Special Olympics Finds Poor Medical School Training Contributes
to Health
Care Disparities for People with Intellectual Disabilities --
Research
reveals that a person with an intellectual disability would have
to call 50
doctors to find one who had a minimum amount of training to
treat him,
August 9, 2005
http://northamerica.specialolympics.org/research/documents/Health-Research-
Release.doc
Horwitz S., Kerker B., Owens P., Zigler E. The Health Status and
Needs of
Individuals with Mental Retardation, Washington, D.C., Special
Olympics
Inc.., March 2001
http://www.specialolympics.org/Special+Olympics+Public+Website/English/Init
iatives/Research/Health_ Research/Health+Status+and+Needs.htm
Corbin S., Malina K., Shepherd S. Special Olympics World Summer
Games 2003
Healthy Athletes Screening Data. Washington, D.C., Special
Olympics, Inc.,
February 2005
http://www.specialolympics.org/NR/rdonlyr
es/e4psq4454ak7xc4ed242tzhwwx7kpqd5em2ubllaobi6hcnfy
q5e7lcrarvc7ktxvwgzn5vdyk3hx672y4lhghvijeh/HA_Screening+Data.pdf
B. U.S. Surgeon General Report
U.S. Public Health Service. Closing the Gap: A National
Blueprint to
Improve the Health of Persons with Mental Retardation, February
2001.
Washington, D.C., 2002.
http://www.nichd.nih.gov/publications/pubs/closingthegap/index.htm
C. NPR
States Underserve Disabled Foster Kids, Study Says
by Rachel Jones
All Things Considered, May 4, 2006 · State foster-care systems
neglect the
needs of disabled children -- and the foster parents who care
for them --
according to a national analysis of the child-welfare system.
More than
one-third of the more than 500,000 children in America's
child-welfare
system have disabilities, according to the report, the first of
its kind.
NPR's Rachel Jones reports.
http://www.npr.org/templates/story/story.php?storyId=5383604&ft=1&f=1013
(There is a link on this page to listen to the story).
And, here's the actual report:
https://www.ucp.org/uploads/ForgottenChildrenFINAL.pdf
(Published UCP and
Children's Rights, May 2006)
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Tamie Hopp
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