Healthcare for People With Disabilities - Making It Through the Maze
Social Work Today
By Kate Jackson
Vol. 4 No. 5 p. 12

Getting good healthcare shouldn’t mean hurdling barriers that could be eliminated by better facilities and astute medical professionals.

One in five Americans has one or more disability that may impede their ability to obtain healthcare. Depending on the type and degree of their impairment, these individuals face a range of obstacles to the acquisition of adequate and appropriate healthcare.

According to Gwen Jones, PhD, senior research associate at the National Rehabilitation Hospital, Center for Health and Disability Research, Washington, DC, the type and might of the barriers and the ability to scale them depend on the extent of a person’s disability, as well as the person’s experience with the healthcare system. The nature of people’s limitations and the degree of their independence can vary within disability and diagnostic categories. Nevertheless, most face obstacles that fall within six general categories: finding the money, getting there, getting in, making their needs clear, battling time, and overcoming attitude. According to Jones, who has focused on disabilities throughout her career—first as a practicing social worker and now as a researcher—social workers who are aware of these challenges can help people with disabilities navigate the healthcare system and enhance their care.

Finding the Money
Elizabeth Forte, MSW, LCSW, rehabilitation case manager at Schwab Rehabilitation Hospital in Chicago, works with a mostly low-income population of older adults, many of whom are on fixed incomes. Those with the lowest incomes may qualify for public assistance, but those whose incomes are too high to qualify for Medicaid can’t afford the care they require. “It’s not uncommon for me to send people home with prescriptions costing from $500 to $1,000 per month,” she says. “What are they to do? They’re not going to give up their apartments or their food for the medications.”

In Chicago, such patients are able to benefit from a county system that helps defray medication cost, but the price, in terms of comfort and convenience, is high. Patients must be seen in the County Hospital clinic, says Forte. “We tell them, ‘Bring your lunch and your dinner and get there at 7 a.m.’” They’ll be there all day waiting to see a physician who will rewrite their prescriptions. The patients then must sit the entire next day waiting to get the prescriptions filled in the county pharmacy. “They’ll have two days in which they’re going to sit and wait just to get their prescriptions, and for elders, it becomes a real problem because not only do they have to wait, they must find someone to take them and sit with them,” Forte says. She has younger patients as well with cognitive and vocational issues as a result of brain damage whose care is entirely dependent on approval of their insurance companies, which often is not forthcoming.

Many patients require caregivers, yet funding such care is challenging. “There just aren’t a lot of services for patients who cannot afford to pay privately for assistance in the home,” says Forte. “Many elder patients don’t qualify for state programs if their income is too high.” She says that in Chicago, elder patients’ incomes must be less than $700 per month to qualify for homemaker services at no cost. If their income is higher, they may be responsible for a copayment, which could be as little as $10 to $20 per month or as much as $100 to $200 per month depending on their monthly income. “It may not sound like much, but some of these patients on fixed incomes can’t afford even a nominal copay. People who don’t have the financial resources simply don’t get the home care assistance they need,” she says.

Getting There
The second obstacle to healthcare for many people with disabilities is lack of transportation or difficulty arranging for transportation. Among Forte’s clients are those who require transport to and from rehab yet can’t afford or are ineligible for reimbursement for public or private transportation or ambulance service.

Many patients with wheelchairs don’t have accessible cars or vans and may not always be able to rely on accessible public transportation. While some large cities have paratransit systems or wheelchair-accessible public transportation, residents of smaller cities or rural areas may be left to fend for themselves. Even when these options exist, they’re often less than ideal. “Paratransit services aren’t always door to door,” says Jones. Sometimes, she explains, patients must get on and ride around for a while as other people are dropped off. Buses may arrive early for the return trip and the patients, if they want a ride, must leave their appointments early. “They can’t wait forever,” says Jones, “and they don’t. If you’re not there, they’ll leave, and there goes your ride.”

Getting In
Once transportation hurdles have been cleared, the next obstacle to care—and the most literal barrier—is difficulty gaining access to the healthcare setting. Simply getting to the healthcare providers may require great effort or even prove impossible. The problem may begin in the parking lot, which may have few or no spaces designated for people with disabilities; when adequate spaces exist, there may still not be enough room for people who use a van and require space to let down a lift for a wheelchair. Even when spaces are available and there is room to maneuver, the parking lot surface may not be smooth or level, making it hard to traverse for people in wheelchairs, those who have difficulty walking, and those who use assistive devices such as canes, braces, or walkers.

For a person with a severe mobility impairment who uses a wheelchair, another obstacle to care is simply getting in the building. According to the Americans with Disabilities Act, all buildings where healthcare is provided are supposed to be wheelchair-accessible, yet the reality is that not all are, says Jones.

Healthcare for individuals with these difficulties requires a great deal of advance work. Before even leaving home, they need to get answers to a number of questions: Will I be able to get in the building? Can I get to the providers’ office? Will it be wheelchair-accessible? Will there be an elevator or will stairs present a barrier?

A new set of obstacles may be waiting inside the doctor’s office. The average physician’s office is not likely to be equipped or furnished to accommodate people with disabilities. Space may be inadequate or the furniture too small. Depending on the type of care or procedures that are necessary, the tools, equipment, and furniture may not be adaptable.

Imagine, for example, a young woman who goes to the doctor for an annual physical. “If she’s in a wheelchair, uses a scooter, or isn’t very mobile, then she’s going to have to be transferred to an exam table,” says Jones. More than likely, the patient won’t even be able to get on the table because there’s no one to help with the transfer and because most exam tables in doctors’ offices are not accessible to wheelchair users or adaptable to the various needs of individuals with disabilities. That young woman may not get the Pap smear or examination that might help an able-bodied woman detect or prevent disease.

“Everyone is used to hearing a doctor say, ‘Just hop up on that table.’ That’s not necessarily something everyone can do. There are adjustable exam tables, but a lot of doctors don’t know that when they’re setting up their office, or it’s not something they think about because they don’t have many patients who use wheelchairs or scooters or have limited mobility,” says Jones.

Transfers may be particularly difficult, or impossible, for paraplegics, quadriplegics, those with spinal cord injuries, and people with cerebral palsy who have muscle contractures. “For women with severe muscle contractures, it’s hard for them to get in the positions necessary for mammograms,” says Jones, who notes that mammography equipment isn’t very adjustable for people with disabilities, especially those in wheelchairs.

According to Florence Haseltine, PhD, MD, director, Center for Population Research, National Institute of Child Health and Human Development, National Institutes of Health, and founder of the Society for Women’s Health Research in Washington, DC, for many of these patients, “it’s a constant effort. Everything takes longer and people get quite tired. It takes so much extra time and so much out of their daily lives that they don’t often go for care.”

Making Needs Known
Communication is one of the more formidable barriers to healthcare. Patients who may have certain kinds of cognitive impairment may not always understand instructions. Suppose, for example, says Jones, they need their cholesterol levels tested. “It may seem like a simple thing, but people need to know that they’re supposed to fast for a certain amount of time. If they have short-term memory problems, they may not remember that they’re supposed to fast, unless someone keeps reminding them.” In addition, medical providers and office staff sometimes forget to give people with disabilities specific instructions about what they’re supposed to do. The result, she says, is that after overcoming transportation and perhaps access obstacles, they return home without having gotten their tests because the proper protocols may not have been observed.

More obvious communication barriers may be experienced by those who are deaf or blind. A deaf person going to the doctor may require a sign language interpreter. Physicians are required by the Americans with Disabilities Act to provide interpreters to patients who need them, but many are unaware of that responsibility and others find the prospect of arranging for and scheduling an interpreter to arrive at the patient’s appointed time daunting.

In addition, many patients may be reticent about asking questions or requesting clarification, so doctors won’t know whether or not they’re communicating and getting through to patients who are deaf. “That gets a little risky when you’re talking about medicines, symptoms, or instructions,” says Jones. Often, she says, “doctors will rely on family members to translate, but that doesn’t always ensure privacy for the patient who is deaf. There may be issues that they don’t want their children to interpret for them. If a doctor needs to communicate that the person has a serious health problem such as a cardiac condition, blood disorder, leukemia, or cancer, the patient may not want that spoken out loud to be interpreted by a loved one before there’s been a chance to prepare that loved one for a shock.”

Battling Time
A ticking clock is also a barrier to care in many cases. The time factor enters into both the amount of care that can be provided and the amount of reimbursement that’s paid. The insurance company allows so much time for a given procedure, but everything may take longer for a person with disabilities. “It takes longer for the person to dress and it takes longer to move a patient from room to room,” Jones explains. “Procedures may be harder to perform and often staff are unfamiliar with techniques that may help them, and insurance companies don’t compensate medical professionals for the extra time that it takes to treat people with disabilities.”

Patients may have learned strategies for doing certain things, but explaining these techniques to medical personnel takes time. The unfortunate truth is that patients with disabilities are not cost-effective for physicians. “It sounds awful,” says Haseltine, coeditor of Welner’s Guide to the Care of Women with Disabilities (Lippincott, Williams, & Wilkins, 2004), “but you don’t make anything taking care of such patients. It’s not going to pay the bills, so people don’t get the care.”

Time may impede healthcare before the patient even gets into the exam room. Patients, says Jones, may have to fill out paperwork, yet may not be able to use their hands properly to hold a pen or write. They may have to think ahead and ask the office to send the paperwork so a family member can help or have someone in the office work with them to fill out the forms. Some patients may have visual impairments and require help reading the forms, which would either require extra time from staff, or from family members who may have to take time off from work to accompany and assist the patients at office visits.

This time crunch also makes it difficult for people with disabilities to ask questions or get the information and education they may need to understand what’s happening to them.

Overcoming Attitude
Erroneous assumptions and attitudes of healthcare professionals can keep people with disabilities from getting necessary care or information, especially that which pertains to lifestyle. Issues such as obesity, diet, exercise, smoking, alcohol abuse, sexually transmitted diseases, fertility, and other aspects of reproductive health, for example, may be ignored by health professionals, either because they’re focused on the disability or they overlook the need for an exploration of these issues. “Sometimes these topics are put on the back burner and are not discussed because other issues seem to have greater priority. A physician, for example, may fail to discuss birth control with women with disabilities because they assume the women aren’t sexually active when in fact they may well be,” says Jones, whose team at the National Rehabilitation Hospital is partnering with other universities under a three-year grant from the Centers for Disease Control and Prevention to examine these issues and develop health promotion materials for people with disabilities.

Planning and Educating
Patients who are experienced enough navigate the system through planning. They call ahead and explain their needs to healthcare providers. “They call and say, ‘I have this problem, I have difficulty doing this or that, this is what I need, and this is how I need you to help me,’” explains Jones. Nevertheless, she says, time remains a factor and providers’ lack of understanding can be difficult. “A lot of primary care physicians don’t treat many people with severe disabilities in their practice, so it can be an educational process for them.” Doctors aren’t generally trained in these issues and lack experience working with people with severe disabilities. “They may have had a lecture on it,” explains Jones, “but if they missed that day, they’re not going to have that information, so a lot of times it’s just a guessing game, an experiment, and they just try things out to see what works.”

Facilitating Care
A person with a disability often must take responsibility for informing doctors, office personnel, and medical staff members who assist doctors. Clearly, those patients who lack the skills to do this—that is, those who are not able to plan, network, or educate—may simply not get the care they need. Social workers who make referrals to the medical community can help people with disabilities brainstorm, locate resources, and network with healthcare providers to get the healthcare they need, says Jones. They’re typically very good at networking and they know their communities. Social workers can also help by increasing healthcare providers’ awareness of the challenges experienced by people with disabilities.

One key factor about the social work professional that is unique to service professions is that social workers from the very first day of their training are educated to look at people in the context of their environment. “And when you do that,” says Jones, “you start looking at issues of environmental access and communicating with healthcare professionals about how to help make their settings more accessible for people with disabilities.”

As the population ages and medical advances allow people with injuries and disabilities to live longer, says Jones, more people with disabilities will be using the healthcare system. Those who are educated will use the system better. And those healthcare providers who are flexible, who have a listening ear, and who have a willingness to accommodate will vastly improve the care of this growing population.

— Kate Jackson is a staff writer for Social Work Today.

Improving Healthcare for Children With Special Needs

Healthcare delivered close to home is vitally important, especially when the patient is a child. But how do community pediatric practices adapt to offer the best care when faced with a child with complex and often multiple health needs? In a recent issue of Pediatrics, Dartmouth Medical School (Hanover, NH) researchers outlined a process designed to help any practice become a state-of-the-art “medical home” for such children.

Assessing the effectiveness of a model program they developed, Dartmouth researchers W. Carl Cooley, MD, adjunct associate professor in pediatrics, and Jeanne W. McAllister, RN, MS, research associate in pediatrics, reviewed the experience of four practices in Vermont and New Hampshire that used their programs to identify and implement changes to improve the care they deliver to children with special healthcare needs.

The concept of community-based medical homes—places where care is managed through coordination of clinicians, educators, therapists, healthcare professionals, and caregivers—has been advocated by national health policy makers and the American Academy of Pediatrics as the best model for providing systematic yet individualized care to children with complex conditions and multiple needs.

Still, the changes required for a practice to become an effective medical home can be difficult to make. “Introducing change into a busy pediatric practice is like trying to repair a bicycle while riding it,” the authors write. “Even the most motivated practice finds change difficult to implement. Many primary care providers believe that implementing the medical home concept is the right thing to do but question how they can do so and remain solvent.”

To make the process easier, the authors developed a medical home improvement tool kit that allows practices to look at key functions of the medical home, assess their own operation, and identify the steps and strategies they will follow to become a medical home.

The four participating practices all focused on improving different aspects of their medical home environment. In New Hampshire, Exeter Pediatrics Associates developed previsit and postvisit surveys to elicit parents’ chief concerns and then assessed whether or not these concerns were addressed in the visit.

Dartmouth Hitchcock-Plymouth Pediatrics and Adolescent Medicine of Plymouth created an educational series for children with attention deficit hyperactivity disorder that resulted in new partnerships with parents and schools.

In Vermont, Upper Valley Pediatrics of Bradford began to schedule “chronic condition management” visits to provide regular, proactive care rather than responding to problems only after they arose.

Gifford Pediatrics of Randolph held a series of community forums aimed at facilitating the exchange of information between families and schools about children with acute care needs. Each project has spurred new improvement projects in related areas.

Each of the participating practices also introduced the role of a practice-based care coordinator and discovered the value of systematic consumer input to the design and operation of the medical home.

The success of the model program in these practices and practices across the country is encouraging on a number of fronts, according to the authors, who direct The Center for Medical Home Improvement within the Hood Center for Children and Families at the Children’s Hospital at Dartmouth-Hitchcock Medical Center (www.medicalhomeimprovement.org). Establishing medical homes improves access to care, potentially makes more treatments available to children, strengthens the relationship between families and caregivers, and ultimately provides the child with more comprehensive and effective care.

This has significant implications for the healthcare system nationally, suggest the authors, who note that while children with special healthcare needs make up only 20% of children, they currently account for 80% of pediatric health expenses.

The next step for the authors is to investigate the relationship between medical homes and outcomes for children with special needs. They are interested in whether effective medical homes lead to decreased utilization of the healthcare system, increased patient and family satisfaction, and better health outcomes.

— Source: Dartmouth Medical School