Health Care Policy Position Statement
This Health Care Policy Position Statement encompasses children and adults with physical, mental, emotional, behavioral, developmental disabilities or other special needs.
Disability and chronic conditions are a natural and normal part of the human experience that in no way diminishes a person’s right to meaningful and effective medical care and optimal health outcomes; disability is distinct from health, and health care must be provided regardless or a person’s disability or ongoing health condition.¹
Adults and children with disabilities must have dependable, person-centered comprehensive, coordinated quality health care in the community with access to affordable, comprehensive health insurance.
Too many individuals with disabilities have faced numerous challenges, including life-threatening barriers, in accessing timely and appropriate health care. Problems include the lack of access to basic health care, transportation issues, inability to obtain appropriate quality services, lack of access to specialists, and healthcare professionals who limit options or refuse to serve. Many communities lack health professionals overall but especially those trained to meet the needs of adults and children with disabilities.
To add to the problem, health insurance coverage is frequently inadequate, unavailable or prohibitively expensive. Complexity of accessing and maintaining coverage can be an additional barrier.
People with disabilities and chronic conditions must have access to appropriate, affordable, accessible and available, timely, and comprehensive medical, mental health, and dental treatment throughout their lives.
- Disability must not be a factor in the decision to provide, delay, or withhold care. The person’s health and well being must be the basis for the decision.
Reasonable accommodations must be available to support access, personal needs and decision making.
- Health professionals must receive and have access to specialized knowledge and training to assure the individual’s maximum health outcomes and to prevent secondary conditions.
- Care must be individual and/or family centered.
- Reimbursement rates for health care professionals must reflect the fact that many people with disabilities have needs that require more time with a health care provider and coordination of care. Reimbursement rates must not provide a disincentive for healthcare professionals to provide services.
- Services must be high quality and:
- Based on a broad definition of medical necessity and include:
- Primary and secondary preventive care and health maintenance and health promotion;
- Treatment(s) for illness or ongoing condition(s); and
- Therapies, equipment, care coordination and other needed supports to maintain or prevent deterioration of existing functioning.
Not denied on the basis of disability.
- Given only with the informed consent of the individual or the surrogate decision-maker and include the use of advance directives when applicable.
Health care must be based on the following principles:
- Non-discriminatory: Prohibits denials for pre-existing conditions; prohibits practices which set higher premiums solely because of the existence of a disability; and provides timely access despite disability, age, race, location, income, or health status.
- Comprehensive: Ensures a wide array of services including acute, chronic and preventive medical care, dental care, mental health care, habilitative and rehabilitative care, care coordination, personal assistance, and other needed supports.
- Appropriate: Ensures services based on individual need, preference, and choice.
- Available and Accessible: Ensures that there are adequate networks with specialists that can serve individuals with disabilities and that the network providers have available office hours, limited waiting times, and adhere to ADA requirements for facility access.
- Equitable: Ensures that people with disabilities will not bear a disproportionate share of the treatment limitations or costs.
- Efficient: Maximizes quality care and minimizes administrative costs. Utilizes flexible and cost effective methods of health care delivery.
Other considerations include:
- Informed consent. The decision to accept or refuse treatment requires informed consent. Informed consent requires that the individual decision-maker or surrogate decision-maker:
- Have the legal capacity to give consent.
- Be given enough information to understand a) the benefits and risks of the proposed treatment, b) alternative treatment options along with related benefits and risks.
- Be offered the opportunity to ask questions and receive answers understandable to that person.
- Not be coerced to accept a particular treatment or treatment plan through deceit or threat.
Surrogate Decision-making. If an individual is unable to make his/her own medical decisions and does not have an advance directive such as a “Living Will,” or a health care power of attorney, a surrogate decision-maker should be legally named and authorized to make these decisions on behalf of the individual before a crisis arises.
Prenatal Diagnosis. If a prenatal diagnosis of disability or a serious medical condition is determined, scientifically sound, unbiased and complete information about the disability or medical condition must be provided as a part of genetic counseling to assist the family with decision making.
1 World Health Organization, 2001; U.S. Department of Health and Human Services. The Surgeon General’s Call to Action to Improve the Health and Wellness of Persons with Disabilities. U.S. Department of Health and Human Services, Office of the Surgeon General, 2005.