During the past 40 to 50 years there have been numerous changes in our society with respect to the management and treatment of people with disabilities. In addition, there have been many advancements in medical care. As a result, most of these individuals reside in the community rather than institutions and depend upon community-based private practitioners for oral health care.
How Did These Changes Occur?
Prior to the twentieth century, social
attitudes reflected the view that persons with disabilities were unhealthy, defective and deviant. For centuries, society as a whole treated these people as objects of fear and pity. The prevailing attitude was that such individuals were incapable of participating in or contributing to society and that they must rely on welfare or charitable organizations.
Generally speaking, prior to the late 1800’s, people with mental retardation, cerebral palsy, autism, and/or epilepsy resided at home and were cared for by their families. Life expectancy for severely and profoundly disabled individuals was not as long as it is today.
Beginning in the late 1800’s, institutions were built by state and local administrative agencies to house people with developmental disabilities. These institutions were usually built on the outskirts of town. Societal attitudes fostered this segregating style of management. Unfortunately, segregating from society further stigmatizes people.
Florida Farm Colony for the Feebleminded and Epileptic was built in Gainesville, Florida in 1920. Management of residents was based on a “custodial” model. They were not integrated into community programs. Obviously, segregation from society is stigmatizing.
Many legislative and societal changes occurred in the 1960’s and 70’s which had a great influence on the treatment of and attitudes toward people with disabilities.
- A Presidential Panel established by President John F.
Kennedy, affirmed that mental retardation is not a hopeless condition; it is subject to prevention and amelioration.
- President Kennedy passed the Mental Retardation Facilities and Community Mental Health Centers Construction Act of 1963. This fostered the establishment of University of Affiliated Facilities which provided care to people with disabilities.
- Medicaid and Medicare were established in the mid-1960’s, making it possible for many developmentally disabled persons and their families to secure medical and other long-term care in their communities.
- President Lyndon Johnson established a permanent presidential committee on mental retardation in 1965.
- The Civil Rights Act was passed in 1964; tenets of which were
subsequently applied to many disadvantaged groups, including people with developmental disabilities. The civil rights movement spread and consumers began to organize.
- Legal Advocacy by groups such as the ACLU in the “public interest” resulted in numerous judicial decisions expanding the rights of people with developmental disabilities.
- President Nixon established a goal of moving 1/3 of the nation’s 200,000 institutionalized individuals with mental retardation into supportive community living. He issued presidential directives that required the Attorney General enforce the rights of mentally retarded and that the Department of HUD create ways to improve their housing.
- A mandate included in the Rehabilitation Act of 1973 required states to address the vocational rehabilitation problems of the severely disabled as a first priority.
- Creation of Supplemental Security Income (SSI) and
supportive social services (Title XX of the Social Security Act) provided federal aid for services for the developmentally disabled.
- Section 504 of the Rehabilitation Act of 1973 prohibits discrimination against “otherwise qualified” handicapped persons in any federally supported program.
- New standards were created for Intermediate Care Facilities for the Mentally Retarded (ICF/MR facilities) receiving Medicaid support.
- The Education for all Handicapped Children Act (PL 94-142) was passed in 1975.
- The Air Carrier Access Act of 1986 prohibited discrimination in the air travel industry.
- Amendments to the Fair Housing Act prohibited discrimination in selling and renting of public and private housing. Landlords required to make accessibility modifications at their own expense.
- Finally, the Americans with Disabilities Act was passed in July
26, 1990. Essentially, this law is civil rights legislation for persons with disabilities. The ADA attempts to guarantee the rights of full inclusion into the mainstream of American life for all persons with disabilities.
As a result of these changes in the management of people with disabilities during the 1970’s and 80’s, tow of Florida’s six large institutions for people with developmental disabilities were closed. Although there are 4 remaining institutions, they have been significantly downsized. For example, one these institutions had approximately 2,500 residents in 1960, today, however, only 540 people reside there.
A Lou Harris poll conducted in 1991 was revealing and positive. For example, 98% of individuals questioned believe that all people, regardless of one’s ability, should have an opportunity to participate in mainstream society. Furthermore, there was a strong sentiment toward increased employment of persons with disabilities; 92% polled believed that employment of persons with disabilities would be economically beneficial to society.
There is a strong trend toward acceptance. These attitudes are in sharp contrast to the prevailing attitudes of the first half of this century.
The terminology used to describe people with disabilities has been changing along with changes in society’s attitudes. Very old terms include; idiot, imbecile and moron. These terms were replaced with “mentally retarded” and “disabled”. In recent years, it has become important to emphasize the individual, not the person’s disability; e.g., “individuals with mental retardation” rather than “mentally retarded people.” People with disabilities want to be recognized for their abilities, not their disabilities. Some individuals prefer the term “differently abled” rather than disabled.
Several years ago the Academy of Dentistry for the Handicapped changed its name to the Academy of Dentistry for Persons with Disabilities.
The numbers are dramatic, approximately 52 million Americans have some type of disabling condition such as cerebral palsy, mental retardation, depression, spinal cord injury, visual impairment, arthritis, and muscular dystrophy; to name a few.
As health care has improved and many of the once acute and fatal conditions become chronic and manageable problems, these patients have continued to grow in number and seek care from private practitioners. Therefore, dentists and other oral health care professionals have an increasing responsibility to identify patients with systemic diseases, compromising conditions, and disabilities that have an impact on, and can be impacted by, oral treatment. This is, more patients will require oral health care that is optimally coordinated with the systemic conditions.
Some of the issues that affect the daily lives of people with severe disabilities are:
- community living: is there housing available that accommodates their disabilities? is financial help available?
- transportation: is transportation available? is it convenient? who will pay for it?
- education: is special education available? will it result in marketable job skills?
will employers hire a person with a disability? are employers willing to make necessary accommodations? is reliable and affordable transportation available?
- health care: is medical and dental treatment available in the community? does the public health department provide care? is financial assistance available? is transportation available?
Historically, many of these “special patients” received care in settings such as institutions, hospitals, infirmaries, and nursing homes. Due to the substantial increase in the number of individuals now living with unique special needs as well as society’s desire to remove physical and psychological barriers and stimulate health care access, the trend is for these people to seek care from traditional community-based private practitioners. However, people with disabilities have experienced some difficulty accessing comprehensive oral health care in the community. Several reasons for this have been identified:
- reimbursement for dental services is inadequate (e.g. Medicaid)
- many dentists have not been trained to treat patients with disabilities
- some patients are uncooperative, resistant during dental treatment
- some dentists believe special equipment is required to provide care
- dentists are too busy with other patients
The current situation requires all of us to become competent in providing care to patients with a variety of disabilities.