Having good health or the absence of health problems affects nearly every aspect of life. The best possible health is necessary to lead the best possible life, to be independent and productive. This is also true for persons with intellectual disabilities. Until recently, people with intellectual disabilities have, as a general rule, not received good medical care or clinical services. In the distant past they were often abused or put to death solely because they had a disability. In the late 18th and early 19th centuries, they began to be placed in institutions. While initially perceived as training programs, they quickly developed into custodial care centers where people with intellectual disabilities placed there received little or no real clinical care. Interestingly, now that most people with intellectual disabilities are living in the community, developmental centers are becoming centers of excellence as is true for Tennessee.
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In recent years, people with intellectual disabilities have been served mainly in the community but in generic settings where clinicians often have had little training or experience and who may have some of society’s negative attitudes toward this population. Lack of clinician experience and exposure to disabilities or people with disabilities and lack of understanding of the disability itself has often led to denial of or inappropriate care. For example, many folks feel that Down syndrome persons do not live very far into adulthood while they may enjoy a productive life with a median life span of almost 57 years. Another misperception is that persons with intellectual disabilities do not “enjoy” life so why should they need good health or good health care. And, as with the rest of society, persons with intellectual disabilities are getting older and have increased health care needs as is true for the rest of the population. On the other hand, more clinicians are becoming interested in people with intellectual disabilities and there is increasing, although limited, understanding about their clinical issues and treatment. Many people with intellectual disabilities, along with the rest of the population, are recipients of the advances in technology. As an example, thirty years ago there were very few medications available for seizures, a problem which occurs in about 40% of persons with intellectual disabilities. Currently there are around 20 medications to treat seizures as well as other advanced technologies such as vagal nerve stimulation. At the present time it is possible for persons with intellectual disabilities to enjoy the advances in medicine enjoyed by the rest of the population which may include any health care modality such as advanced procedures, surgery, medications and treatments.
Health encompasses many areas. Most of us first think of physical health which generally refers to the body and body processes but it also includes mental health which includes such things as self image, feelings, coping abilities and behavior. Another area is social health which includes the ability to get along with people, relationships and the feeling of accomplishment. Wellness issues, such as attending to exercise and diet, are now considered important in maintaining and promoting good health. Issues related to aging such as living as long as possible with a good quality of life and dying in a dignified manner are also of concern to persons with intellectual disabilities. Others areas of importance include the concept of risk. This includes heredity risks, environmental risks, diagnosis-specific risks, as well as medical and behavioral risks.
All people with intellectual disabilities have the same health problems and health needs, as well as response to treatment, as the general population. However, these problems may present in a different manner in persons with intellectual disabilities or may be difficult to interpret secondary to lack of information; either the person is non-verbal or lacks records.
In general, persons with intellectual disabilities have health issues that fall into three general areas:
Developmental disability specific clinical issues such as intellectual disabilities, cerebral palsy, autism or genetic syndrome such as Down syndrome. These disorders are not generally well understood by clinicians in general practice
Associated medical problems or secondary complications related to diagnoses stated above. This would include issues such as dysphagia in persons with cerebral palsy or Alzheimer’s disease for which people with Down syndrome are at high risk
General medical issues not related specifically to intellectual disabilities have the same importance, treatment and concern as in persons without intellectual disabilities and include such issues as elevated cholesterol levels, heart disease, cancer and other general medical problems
In addition to clinical services that are available for the general population, many specialized clinical services are available to persons served by DIDD mainly through the HCBS waiver program. These services include such services as occupational therapy, physical therapy, nutrition, nursing, mobility and orientation (not an inclusive list) which are modified for this specialized population and include chronic and maintenance care. Also covered are services that are unique to this population such as specialized behavior services and assistive technology. These services are delivered by persons credentialed by DIDD and paid through TennCare. They are planned through the ISP (Individual Support Plan) process and are tailored to each individual’s needs.
DIDD also has requirements and programs to help with the support of health care and clinical treatment not paid for by DIDD. As for the general public, these services are built on a “partnership” model. This means that the persons supported supported in the DIDD system, and the people and plans associated with this support, have an obligation to partner with the treatment program. Among the supports that DIDD now requires and provides for people with intellectual disabilities, health and clinical services rank high in contributing to well-being, independence and productivity in promoting a high quality of life.