When Your Child Has Special Needs: Long-Term Health Care Issues

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 Seattle Children's Hospital and Regional Medical Center. "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 special 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 special need 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 for their special needs child 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 special needs 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 special needs 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 special needs 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 special needs 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 special needs 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 special needs equipment. She also strongly encourages any family with a special needs child 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 of special needs children, 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 of raising children with special needs.

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: