All
Washington state families may feel some pressure from rising health
care costs. But consider the situation for families raising children
with long-term special health care needs -- physical or developmental.
For many such families, securing care for their children has always
been a challenge fraught with uncertainty, emotional and physical
fatigue, and financial drain. And the situation is only becoming more
difficult.
"Any family with a disability can drop over the edge
financially," says John Neff, M.D., Director of the Center for Children
with Special Needs at Children's Hospital and Regional Medical Center
in Seattle. "That's what people don't understand. A family member may
have to stop working to care for the child, and out-of-pocket expenses
can escalate to unbearable levels."
Many complex forces are creating a health care crisis in the U.S.,
including escalating costs, reduced benefits and an increase in the
uninsured that feed health care inflation and decrease access to care.
But these elements have particular repercussions for families with
children who have long-term health concerns, Neff says.
Responsibility for addressing these issues falls on many, including
insurance companies and employers, Neff says, but government bears the
most blame for failing to support these families and children by
helping to rein in inappropriate costs.
"No one is pulling together to say we really need to take care of these
kids, as the government does with the Veterans Affairs program or the
elderly," Neff says.
Cuts to Medicaid (new Federal cuts were just announced in February
2006) force states to choose between the health care needs of children
and the increasingly large elderly population, as well as other
statewide needs such as education and transportation. "Less than 25
percent of Medicaid funds go to support children's health in Washington
state," Neff notes.
The managed care model, which has become more prevalent in recent years
as both private and public plans scramble to save money in the face of
crushing costs, can limit the kind of specialty care that children with
special needs, in particular, depend on. And the lifetime health
insurance limits associated with some insurance policies are a
tremendous concern for families with a child whose long-term care may
amount to millions of dollars over his or her lifetime.
Low-income families may have greater access to federal and state aid,
but that support is not without hurdles. In some cases, doctors will
not accept Medicaid patients due to low reimbursement rates. Also, aid
programs can come and go and eligibility requirements change, leaving
families with the stress of knowing that a funding source could
disappear at any moment.
For middle-income families who have children with special health care
needs, the burden can in some cases be even greater. These families may
not meet eligibility requirements for government programs but also may
not have benefits that cover all available specialty care that could
provide better outcomes for their child. In the case of the
self-employed, insurance coverage may be minimal or non-existent.
Financially, these families may be left to scramble on their own or
forced into the poverty level that qualifies them for public support.
Working within -- and beyond -- the system
When their son Arthur was 2 years old, Katrina Davis and her husband
Ned Conroy of Seattle's Madrona neighborhood learned that he had
autism. They immediately did all they could to learn about the
condition. When the diagnosis came four years ago, information about
autism spectrum disorders was scarce, but through diligent research
they learned that a groundbreaking therapy involving frequent and
intense one-on-one contact had a good chance of improving the
day-to-day functioning of children with autism.
"Now if you are a parent, and your kid has leukemia or cancer, or
diminished lung capacity," Davis says, "whatever treatment exists to
make them more able, you would do it and would expect insurance or a
medical provider to help with that treatment plan."
However, the Davis/Conroys soon discovered that their private
managed-care plan would only cover one hour per week of speech therapy
when the recommended treatment for their son would require five hours
of speech therapy and between 25 and 40 hours of behavioral
modification therapy per week -- at a combined cost of between $20,000
and $40,000 per year. Upon losing an appeal to their insurance provider
for greater coverage, the family decided to cut their losses and turn
their considerable positive energy toward fundraising on their own.
"I decided that if you can't find a way, you make a way," Davis says.
"It was easy for me to fundraise, it felt OK. I am helping my kid and
raising awareness about autism."
Davis commented that some people sell their homes and take get extra
jobs to fund the expensive therapies recommended for children with
autism. The Davis/Conroy family chose to hold events including a
rummage sale, silent auctions at Seattle's Showbox Theater and a
raffle. The family has raised about $35,000 since 2002 to offset the
costs of Arthur's therapy.
Katrina credits her outgoing personality, creativity, energy and family
support to her successful fundraising, but she acknowledges that not
everyone can or would want to tackle such a challenge in this manner.
The Davis/Conroys were able to provide the in-home treatment program
for Arthur that Davis can see is making a difference. She is painfully
aware that many families continue to wait and hope for funding for
their own children.
Using your voice in a new way
When Stacey Goodrich's daughter Raechel was born three months
premature, the emergency complications related to her low birth weight
generated approximately $1 million in medical costs before she could
even leave the hospital. As a result of her premature birth, Raechel,
now 9, lives with cerebral palsy, a seizure disorder and global delays.
Goodrich's insurance company and the state collaborated to pay for the
cost of Raechel's initial care -- a completely novel approach,
according to Goodrich. Due to her low birth weight, Raechel was
eligible, at that time, for Social Security insurance. Goodrich
believes that if Raechel were born today, these supports might be
available in part but not in full, and the family would be vulnerable
to bankruptcy.
Goodrich, a single mom who lives in south Seattle, feels she has been
lucky, but she also has been resourceful in the face of her daughter's
disability. Goodrich successfully pushed her insurance company to
contract with a better medical equipment provider. And she located an
agency that would help fund special medical equipment for Raechel not
covered by insurance. Goodrich has become expert at finding excellent
respite care -- care that is currently paid for by the state -- that
gives her a break from the constant one-on-one monitoring that Raechel
requires.
"I know that if the family-support money that pays for respite care
were to go away, or if we had to come off of medical coupons and I had
to be responsible for the drugs or therapy Raechel requires, I couldn't
make it," Goodrich says. "I think a lot of families are in that
situation."
Although Goodrich can now balance work and care for Raechel with
part-time employment as a school counselor and her private
movement-therapy practice, she has had her share of struggles and
uncertainty. And she lives with the knowledge that services for Raechel
could be cut back at any time.
Goodrich encourages parents of children with special needs to be strong
and believes that a lot of people don't have a sense that they can
fight back. "You may have to use your voice in a completely new way,"
Goodrich says. "My greatest advice is don't accept the first 10 no's
you receive. If you don't like what one person is telling you, hang up
and call back the next day."
Goodrich finds eBay to be an excellent resource for lower-cost
specialized medical equipment, like wheelchairs appropriate for feeding
therapy, when a health plan will only cover the standard equipment. She
also strongly encourages any family with a child with special needs to
create a special needs trust in the child's name so they can obtain
matching funds from the state to help fund the lifetime care of their
child.
Creating a "medical home"
Goodrich may not have a name for it, but what she has been able to
create for Raechel, through sheer force of will, is a "medical home."
The medical home concept, promoted in Washington state by the
Department of Health's Children with Special Health Care Needs Program,
originated with the U.S. Maternal and Child Health Bureau and the
American Academy of Pediatrics. It refers to coordinated care that is a
true partnership between families and physicians, and it is defined as
"primary care that is accessible, continuous, comprehensive,
family-centered, coordinated, compassionate, and culturally effective."
Many families with the required resources and energy have managed on
their own to create a coordinated care system for their children with
special health care needs. But with the promotion of "medical home" on
an institutional level, agencies now are working to build integrated
resources to help bear some of this burden.
Experts know that there are no easy solutions for families, and that
systems are not perfect. Agencies within Washington, such as the
Department of Health program, Parent to Parent, the Fathers Network,
PAVE and the new Family to Family Health Information Center, are
working with the resources they have to educate parents, hospitals,
clinics -- all potential points of care -- on how to coordinate systems
for families facing these immense challenges.
Rhonda Aronwald is a Seattle-based communications consultant, freelance writer and mom of a second grader.
Mapping a plan to support your child with special needs
John Neff, M.D., Director of the Center for Children with Special Needs
at Children's Hospital, suggests the following plan for getting
centered and developing financial goals for families who have children
with long-term health care needs.
- Start
planning finances. Neff explains that many families, especially young
ones, drag their heels in examining finances, but if a family has a
child with special health care needs, they can't afford to avoid this
task. Do everything you can to contain costs. Meet with a financial
planner. Create a Special Needs Trust for your child.
- Examine
health insurance. Find out what is covered by your plan. Determine
out-of-pocket costs and if the plan has lifetime limits. Shop around if
you can. One resource is the Washington State Office of the Insurance
Commissioner.
- Explore
every avenue for potential support. Find an appropriate support group
for you and your family. Draw on publications and other state, public
and private resources (for instance, Starting Point is a resource guide
for parents available through the Center for Children with Special
Needs, www.cshcn.org. Talk with other parents. An example: Some
Microsoft employees who have children with autism came together and
proposed a plan to the company regarding the expensive yet proven
therapy available to their children. Microsoft now covers the costs of
the therapy in its health plan.
- Coordinate
the best possible "medical home." Search for a health care practice
that you feel comfortable with, that provides quality services and that
will advocate for your child and your family's care.
- If you have any energy left over, get active. Write letters, join advocacy groups, make your voice heard.
Resources
Parent support and activism:
Financial planning and special needs trusts:
Insurance resources:
Creating a coordinated care program:
State resources for children with special health care needs:
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Children with Special Needs 
