Chronic health care issues and transitioning from child-centered to adult-based health services are additional concerns during the transition years. Health matters are not usually discussed directly with children; yet as the children grow older, they need direct services, that is, without having the parent act as intermediary. Frequently, adults with disabilities and ongoing health care needs continue to be served by pediatric hospitals or clinics that are often ill-equipped to address adult issues such as weight control, sexuality, family planning, sexually transmitted diseases, prenatal care, marital upheavals, or depression.

Pediatric facilities may seem like the safest route to choose. After all, the doctors are familiar with the individual and understand his/her needs. Furthermore, it can often be difficult to find new doctors and facilities that are sensitive to an individual's disability. But think about how it would feel to be a thirty year old in a waiting room full of children. Furthermore, long-term health care providers for individuals with disabilites may eventually retire and the individual would require new service providers anyway. There is no better time to begin this transition than during adolescence. "Learning how to manage one's own health care and knowing how to communicate and advocate for good health care is essential to the success of their life in the community" (from the newsletter Connections, Summer 1992, see Appendix I under Information and Referral, National Center for Youth with Disabilities).

In 1989 Surgeon General C. Everett Koop held a conference to address transition and health care needs. At the time, there were no standards and many barriers. Subsequently, numerous model programs have emerged; however, the barriers remain. Pediatricians are often ambivalent about transferring the care of their long-standing patients. They are often worried about the care the patient might receive from someone who is not as familiar with their needs and are merely worried about abandoning their patients. (Connections, Fall/Winter, 1992)

Many adult providers are unfamiliar with chronic conditions that begin in childhood because they have never before been asked to care for these individuals. Further, we still do not have a full understanding of how best to serve young adults in the adult health care system. There exists insufficient experience to know best how to meet the varying needs of individuals as they grow older. No empirical data exists to help design and develop programs and services. Health care providers lack the tools needed to determine positive outcomes of a planned transition.

However, we do understand a few things. First, individuals should be able to move safely, appropriately, and without compromises to their care, into an appropriate adult health care system. Second we know that the following are three important areas of concern:

• Full Participation in Society
• A Positive Future
• Age-Appropriate Care

Transitioning to adult health care is a crucial ingredient in the overall transition to adulthood. Continued child-centered care may impede the attainment of independence. Within an age-appropriate setting, adolescents are more likely to be able to learn to manage their own health care and adopt adult behaviors and responsibilities.

A Positive Future

When a youth transitions from a child-centered facility to adult health service providers, it indicates to the youth that he/she has a future despite chronic health needs. This proves to be "a powerful statement of confidence and a positive commitment to living."

Age-Appropriate Care

Aside from the fact that adult facilities are most familiar with adult issues, compliance in medical care may be improved when treatment plans are designed to match one's age. If transition is not made to adult care, young people may fail to seek care except in life-threatening or other crisis situations. However, if they make connections with the adult health care system during their transition years, they will be ensured of "acceptable, and, therefore regular health care. Otherwise health care may be reduced to crisis management or episodic emergency room encounters."

Dental Care

When considering health care for individuals with disabilites, dental care must not be overlooked. The oral health of all people is very important, and is of particular concern for some individuals with disabilities.

For many people with disabilities, especially those with more significant conditions or behaviors, attaining an adequate level of oral hygiene is often difficult. Their oral health can worsen if the person with a disability is using certain medications, (e.g., Dilantin, which causes overgrowth in gums, or behavior-related medications that cause mouth dryness, which can lead to tooth decay). Training family members, staff, or the disabled person in techniques and strategies in daily oral hygiene will help in preventing dental disease and promoting good oral health care.

When an individual needs oral surgery or another emergency service, informed consent is often an issue. A tooth extraction is a surgical procedure whether it is done in the office or in a hospital. This procedure, along with any emergency procedure, requires the patient's written consent. A parent can sign for these types of procedures only if the person with a disability is under age 18 or if the parent or another person is the legal guardian. A parent or caregiver should carefully consider if the person with a disability is capable of giving informed consent for any surgical or invasive procedure.

Access to individual dentists and dental practices is another considerable concern that can impede good oral health care. Many adults with disabilities rely on Medicaid as their only medical insurance. However, the majority of dentists and dental practices in Massachusetts do not accept Medicaid for payment of services.

If you or your family member is having difficulty finding a dentist or dental practice that takes Medicaid and treats patients with disabilities, especially individuals with difficult-to-manage behaviors, contact the Tufts Dental Facility at (781) 899-7640. Located at the Fernald Developmental Center, the Facility serves individuals with disabilities and has clinics convenient to most areas of the Commonwealth. They offer comprehensive dental services for people with a wide range of disabilities.
 
 

• Primary Health Care Needs
• Nutrition and Fitness
• Sexuality (including sexually transmitted diseases, HIV infection, abuse, and pregnancy)
• Substance use and abuse
• Psychosocial Needs
• Self-Care
• An individual's need to talk and voice questions and concerns
• Transportation to and from medical appointments
• Adjusting the environment to accommodate one's equipment
• An understanding by all team players how the health needs of an individual relate to the rest of the social/educational and adult systems
• Accessibility to adequate health facilities
• Financing health care
• Need to assist doctors to understand transition and what he/she can do to make it successful

Outgrowing the System

(From Connections, Fall/Winter, 1992, see Appendix I under Information and Referral Services, National Center for Youth with Disabilities, for more information)

A graduate of North St. Paul High School, Jim spent most of his senior year at Lakewood Community College in the post-secondary program, an option offered to advanced placement high school students to earn college credit. Jim's class was among the first to have the post-secondary option. Jim is accustomed to being a "first."

As a child with cerebral palsy, Jim saw physicians at Gillette Children's Hospital in St. Paul, and later at St. Paul Children's Hospital, for continuing orthopedic care. "Most of my surgeries were done at Children's Hospital in St. Paulnine or ten operations. Each was followed by about four months' recovery and physical therapy. My last surgery was when I finished growing, about age 17 or 18."

After his later surgeries, like many young adolescents, Jim was about the oldest person being seen in physical therapy. "You learn to live with it," he says. Jim's comments are typical of young people with chronic conditions and their parents. One parent who recently participated in a survey conducted by an HMO explains, "Our pediatrician has been seeing our daughter and family for as long as he has been in practice. Cutting that off and trying to start over would be impossible."

But adolescence is essentially a time of change. Needs change, whether planned or unplanned. Just as the adolescent outgrows the parents' insurance policy and the benefits of state and county services for children, the needs of a mature adult with chronic conditions from childhood will outstrip the expertise of pediatric service providers.

Jim counts himself lucky when it comes to most of his medical care; continuity of care has been easily maintained. "Our family has gone to the same clinic for general practice since we moved to Minnesota. It's nice having the same doctors."

Still, Jim is forcing some service providers to adapt. "I got some financial aid from the Department of Vocational Rehabilitation. Now that I'm going to grad school, my counselor didn't know quite what to do because he's never had a student go to grad school before."

Right now, the biggest change in health care for Jim is physical therapy. "Although I would like to continue it now because my muscles stiffen up, the insurance only pays for physical therapy for short term. And the cost of it is just outrageous if insurance doesn't pick it up." Jim also worries about future needs. Interested in pursuing a career in research, "I'll probably have to move out of state and I'm not sure what the services will be like."
 

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