Disabilities

Up to eight million children between ages ten and eighteen years are thought to have some degree of limitation in their school or recreational activities due to the presence of chronic health problems. Of the adolescents who have disabilities around sixty percent have a moderate limitation, thirty-three percent have a mild limitation and the remainder have mild limitations. Data from the 1988 National Health Interview Survey indicated that 31.5 percent of adolescents between ten and seventeen years had one or more chronic conditions. In England, for the year 2000, nineteen percent of boys and seventeen percent of girls under age twenty years were found to have mild disabilities.

The National Center for Health Statistics determined the prevalence of chronic conditions in youth between ages ten and twenty-four years in the United States between 1986-88.

The 5 most common conditions are noted as follows:

Survival rates for adolescents with chronic medical conditions have improved in recent decades. For example, survival rates to age twenty years have increased to sixty percent for individuals with cystic fibrosis, ninety-five percent for teens with insulin-dependent diabetes and ninety percent for youth with sickle cell anemia.

All youth with disabilities, as their counterparts without disabilities need to move through the following developmental tasks to reach adulthood:

• Develop a personal identity with an acceptable self-image
• Establish intimate relationships outside the family including some expression of sexuality
• Move toward a level of independence
• Define a role in the community by undertaking a vocation

Youth with disabilities may be challenged by social messages that bombard teens every day. One need only look at media, popular teen magazines or television and the messages conveyed reinforce the differences between teens who are healthy and those who have disabilities. These messages may impact on the self-image of an adolescent with a disability.

Differences could be especially apparent to the adolescent athlete who has physical challenges. Most high school sports are not adapted to the teen with a disabling condition. Engagement in physical activities, exercise and sports has positive effects on a teen’s physical, emotional and psychosocial health. Self-esteem and self-image may be promoted by sports participation. Teens who have disabling conditions may not have the opportunities to become involved in sports and suffer consequently in their self-esteem.

In addition, adolescents with disabilities may have difficulty forming a personal identity and self-image. Peer relationships and fitting in with a peer group are particularly important for a teen in order to establish a unique identity. A teen who has a disability that is physically apparent will realize how his or her appearance differs from society’s desirable image.

Teens with disabilities may also have difficulties developing personal and intimate relationships. Teens without disabilities may not welcome these adolescents into their peer group. Research has shown that teenagers with and without disabilities when asked to select friends from a group of healthy youth and teens with disabilities select the healthy youth first. Also, due to the illness or the medications, a teen with a disability may not develop physically or emotionally in the same time sequence as his or her healthy peers.

A goal for youth with disabilities is to work toward independence from their families. Of course this will depend on the severity of the disability since many teens with significant disability are highly dependent on their families for support and assistance with the tasks of daily living. Parents and clinicians need to work with the adolescent toward the goal of independence.

And finally, teens with a disability need to seek a role in society. This may involve employment; however if the disability is significant, then other rewarding or socially important activities may be pursued.

Adolescents with disabilities have special needs and requirements for healthcare services. It is especially important that their care is excellent, coordinated, and continuous and they have a “ medical home”—a primary care physician. Often multidisciplinary hospital based teams are needed to manage the teen’s care.

Problems may occur in the financing of this healthcare. When an individual is no longer covered by the family health insurance, services may lapse. Up to twenty-one percent of young adults with a disability do not have health care coverage. To further complicate the problem, insurance provisions regarding preexisting medical conditions may limit coverage. To help fill the gap, there are several federal programs that have been enacted to assure services for adolescents and young adults with chronic illness and disabilities. These include the Supplemental Security Income (SSI) program and Medicaid. SSI provides cash benefits for low-income persons who have disabilities or who are blind. In 2006, Massachusetts enacted a universal medical insurance plan for all in the state.

As the teen with disabilities achieves the developmental tasks of adolescence, then often he or she will also need to transition from the care of a pediatrician or adolescent specialist to a specialist in adult medicine. This usually changes care from a family focus to a disease focus. Adult medicine is predicated on the personal autonomy of the patient. The transition from pediatric to adult care not only involves the whole family, but should be planned over a long period of time and the teen should gradually be allowed increasing responsibility for his or her own health care. Of course this is not entirely different from the tasks of the teen who has no disability. However, the youth who has a disability will have more hurdles to clear.

There are also numerous educational challenges for youth who are disabled. An autistic adolescent may need one to one supervision in a special school setting. The financial implications for these efforts are significant. Some teens may require home tutoring. Others who are covered by the Americans with Disabilities Act may need special programming, materials, personnel or equipment.

Some school systems have added adapted sports to their physical education courses. An adapted sport is modified to meet the special needs of individuals who have disabilities. Aside from self-esteem and self-image issues, youth with disabilities may develop obesity and permanent contractures if they are not physically active. In addition, for individuals with disabilities to achieve and maintain independence, some level of physical fitness should be attained.

Youth with disabilities have been found to have fewer or less definite career plans when compared to their healthy peers. In addition, once employment is secured, youth with disabilities may not earn as much compared to their healthier peers.

Adolescents who have disabilities must not only surmount the issues that all adolescents face, they must also deal with many other problems that are related to their disability. A concerted effort from family, clinicians, educators, peers and other interested parties can help to make these youth adapt well to life.

Related topics:

Academics, body image, chronic illness, depression, exercise, growth and development, independence and rebellion, self-esteem, sports, terminal illness.