ISSUE

Health is a state of physical, mental, and social well-being. The term “health care” encompasses services and supports that assist in attaining, maintaining, and improving skills, function, and community participation. Health care includes all aspects of physical, mental, and behavioral health including wellness, health promotion and preventative services, vision, hearing, oral and dental health care, substance use disorder and addiction services, medication management, pre-natal care, reproductive and sexual health, rehabilitation, pain management and palliative care.

People with IDD often experience a wide and varying range of health conditions leading to poorer health and shorter lifespans. The current health care system is fragmented and does not provide uniform access to a comprehensive array of health services and supports. Planning for health care services and emergency response to pandemics, natural disasters, and other situations resulting in urgent health care needs typically does not involve people with disabilities and advocates to ensure that care is inclusive and integrated. This lack of input and planning contributes to higher death rates in major public health and other emergencies.

While many people encounter difficulty in accessing affordable, high quality health care, people with IDD face additional barriers, sometimes life-threatening, when attempting to access timely, appropriate health services in their communities. People with IDD who have additional marginalized identities – including those related to their socioeconomic status, race, ethnicity, language, or LGBTQIA+ status, – may experience additional barriers resulting in even greater health disparities.

Policy makers must address the social determinants of health which are non-medical factors that significantly influence health outcomes. They encompass the conditions in which people are born, grow, work, live, and age; as well as the broader forces and systems that shape daily life including current and historical social, environmental, and economic exclusions. These social determinants play a crucial role in health equity, both positively and negatively affecting the health status of individuals and communities.

Finally, increasing reliance on technology for delivering and managing health care provides benefits such as easier access to providers or more comfortable settings for appointments. Some technology may also create barriers for people with IDD who may not have the knowledge, skills, or access to technology or the internet to navigate health care through telehealth and scheduling and patient management portals.

Major barriers to quality health care include:

Access

• Underinvestment in public health, health promotion, and wellness targeted to people with IDD results in disparities in preventable health care conditions and poorer health outcomes.
• Plain language explanations or materials are not routinely offered to help navigate a complex health care system.
• Inadequate training of health care practitioners, lack of coordinated care, and inadequate systems of reimbursement are some of the factors that create programmatic barriers.
• Inaccessible clinical settings and diagnostic and medical equipment, along with translation and interpretation challenges, create barriers to care.
• Timely access to health care providers can also be limited by geographic availability of providers, too few health care professionals willing to take public health insurance, and lack of transportation options.

Discrimination

• Health care providers sometimes provide inadequate or inappropriate interventions and treatments or deny appropriate care for people with IDD because of professional ignorance as well as ableism.
• Discrimination may take the form of refusing to see individuals with IDD, treating them differently, ignoring or not responding to individual’s requests, wrongly attributing health care issues to the fact that they have IDD, deciding that appropriate treatment is not needed due to their IDD (i.e. diagnostic overshadowing), or not viewing people with IDD and their advocates as reliable communicators of health issues.
• Providers also may fail to follow federal and state non-discrimination laws and policies in providing health care to individuals with IDD.
• State statutory liability damage limits discriminate against people with severe and/or life-long disabilities because they fail to provide sufficient compensation.

Affordability

• People with IDD are more likely to live in poverty and be unable to afford public/private insurance premiums or out of pocket costs.
• For cost containment purposes, many public and private health care plans limit access to specialists, medications, durable medical equipment, therapy services, and other critical health services, creating access barriers and making these critical services unaffordable.
• Even when services are available in a community and providers are willing to accept patients with IDD, many people with IDD lack adequate public or private insurance to pay for them.

Communication and personal decision making
People with IDD may have difficulties communicating their health concerns and goals and making health care decisions without support.

• When making their own decisions about health care, many people may want or need support in making the decisions. This is often referred to as supported decision making.² Some states have added supported decision making to state laws to give formal recognition and make it clear that individuals have the right to make decisions in this way. Individuals often choose friends, family members, professionals, or other trusted advisors to be their supporters.
• When people are unable, for various reasons, to make their own decisions, state laws allow other people to make decisions for them instead. This is known as surrogate decision making and includes surrogates appointed in advance by the individual in an advance directive³ such as a “living will” or through a health care power of attorney. If the person has not indicated who they want to make their decisions, state laws provide for default surrogates or guardians. There are standards that surrogates must follow in making these decisions.

However, often individuals’ choices regarding health care decisions are not respected and implemented by health care providers and, where applicable, surrogate decision makers.⁴ People have not been provided access to all necessary supports and information required to understand a health care decision and communicate their choices. People have been denied access to their chosen support person in medical settings. Medical practitioners who are unfamiliar with supported decision making may therefore limit or ignore an individual’s choice in medical treatment. Further, health care facilities and settings are often not prepared to respect or meet the communication needs of the individual.

POSITION

Important elements of this Health Position Statement include timely access, nondiscrimination, affordability, and communication and personal decision-making, including surrogate decision-making. These elements are described more fully below:

Access

• Wellness, health promotion, and a robust public health infrastructure are essential components of health care.
• Health care providers for persons with IDD must meet the highest standards of quality, including a comprehensive approach to education, treatment, disease prevention, medication management, and health maintenance.
• Health care professional training must reflect inclusive health care best practices, including disability information, research, and clinical training.
• Health care providers must be adequately incentivized to provide inclusive care, including to those with IDD.
• Health care providers must be precluded, by policy, practice standards, and ethics frameworks, from limiting the number of patients with disabilities, including IDD, from being accepted into their practices.
• People with IDD require and must have access to effective strategies to manage their care including care management, referral processes, comprehensive transition from pediatrics to adult medicine, and health promotion efforts.
• Health surveillance and the assessment of health outcomes must include disability status. Public health initiatives must support the goal of reducing health care disparities and inequities for people with disabilities and improving health and function.
• The health care system must be fully accessible with respect to communications, facilities, equipment, and technology. It must provide necessary accommodations such as sufficient time, explanations, translators, and interpreters.

Nondiscrimination

• People with disabilities must not experience disability-related discrimination in decisions to provide, delay, deny, or limit health care interventions or treatments. Protections must be in place to assure that an individual’s health and well-being are the only justifiable basis for making medical decisions.
• Health professionals must provide all patients, including those with a disability, an equal opportunity to receive all necessary health care treatment including life sustaining treatments such as cancer therapy and transplantation.
• Health plans must cover treatment for mental health conditions on the same terms and conditions as all other medical diagnoses.
• Providers of health care services for persons with IDD must follow practices regarding health information and records consistent with the guarantees of confidentiality contained in the Health Insurance Portability and Accountability Act (HIPAA).
• Treatments for persons with IDD that are proposed primarily for the convenience of the caregiver (such as medical procedures that interfere with typical growth and development or inappropriate polypharmacy) must be denied.

Affordability

• All people including people with IDD must have universal access to comprehensive, integrated, affordable, high quality health care.
• Efforts to contain health care costs must not create obstacles to care for people with IDD by making needed services or treatments unaffordable or otherwise unavailable. The medical need for care must be determined on an individualized basis.
• Payment methodologies for health services provided to people with IDD must compensate for the true cost of providing accessible services. This includes the costs of treating more complex health needs, and the greater amounts of time often required to understand and respond to those needs. Payment methodologies must not create disincentives to the provision of timely and appropriate services to persons with IDD.

Communication and Personal Decision-Making

In all matters of health, individuals with IDD have basic rights that must be protected, including the right to information and appropriate accommodations to assure informed consent⁵ that allows an individual to accept or refuse health-related services based on:

• Sufficient information to understand the risks, demands, potential for significant pain, and benefits of any procedure for which consent is sought provided in ways that accommodate for communication needs and any cognitive limitations that persons with IDD may experience; and accommodate reading, language, learning, and other differences that are common among persons with IDD and/or distinct to the needs of the specific individual;
• Opportunities to ask questions and receive answers about the proposed treatment in understandable and understood language;
• Full disclosure that declining treatment may affect access to other treatments or services that the person is receiving or might otherwise receive;
• Protection from coercion or deceit to accept or decline a particular treatment, including protection from medical guidance toward or away from specific treatments solely on the basis of the individual’s disability;

Some individuals may temporarily or permanently lack the capacity to make some or all health care decisions. This lack of capacity may not cover all necessary decisions in the individual’s life. The individual should always be assisted in making those decisions which they can make and be assisted in participating as much as they are able in all other decisions. This assistance, including assistance in the form of supported decision making, must be respected and the decisions must be honored.

Surrogate Decision-Making

When a surrogate decision maker is involved and making decisions on behalf of the individual, people with IDD continue to have basic rights that must be protected. This includes the right to appropriate accommodations and information to assure informed consent that allows the surrogate acting on the individual’s behalf (a guardian, a health care power of attorney, or other surrogate decision-maker of the individual’s choice), under appropriate legal conditions, to accept or refuse health-related services.

Advance directives of people with IDD should be honored, including an individual’s specific expressed desires regarding the use of life-sustaining treatments, communicated in written or oral form and recorded in an advance directive, as appropriate to their understanding of the nature, implications, and reversibility of their decision. Where a guardian, health care power of attorney, or other surrogate decision maker is involved, reasonable efforts must be made to monitor, honor, and accommodate indications of “implied assent” to treatment.

When an individual has been determined to lack capacity to make health care 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 identified to make these decisions, preferably before a crisis arises. If no surrogate has been appointed in advance, state law determines who will serve as the default surrogate decision maker. Generally, default surrogate authority under state laws includes the parent of a minor child, the guardian/conservator of an adult, or surrogate decision-makers designated under the state’s health care consent law.

All decision-making by a surrogate decision-maker should be consistent with the principles expressed in the sections above regarding health care and informed consent. Surrogate decision-makers must follow the expressed wishes of the individual. When the individual’s wishes are not knowable, the surrogate must follow the person’s probable wishes, taking into account the person’s known values, and, as a fall back, act in the person’s best interests.

In decisions involving the refusal of medical treatments, or nutrition and hydration, when that refusal will result in the individual’s death, the legal authority of the surrogate decision-maker should be limited to only those situations in which all three of the following conditions exist: (1) the person’s condition is terminal, (2) death is imminent, and (3) any continuation or provision of treatment, nutrition and/or hydration would only serve to prolong dying. However, in such situations, people with IDD must be provided appropriate palliative care, including medical treatment to relieve pain, sustenance as medically indicated, and care designed to relieve isolation, fear, and physical discomfort.⁶

Reviewed/Revised 2024

¹ Intellectual Disability (ID) is a lifelong condition where significant limitations in both intellectual functioning and adaptive behavior emerge during the developmental period (before adulthood).

Developmental Disabilities (DD), first defined in 1975 federal legislation now known as “The DD Act”, are a group of lifelong conditions that emerge during the developmental period and result in some level of functional limitation in learning, language, communication, cognition, behavior, socialization, or mobility.The most common DD conditions are intellectual disability, Down syndrome, autism, cerebral palsy, spina bifida, fetal alcohol syndrome, and fragile X syndrome.

The acronym “IDD” is used to describe a group that includes either people with both ID and another DD or a group that includes people with ID or another DD. The supports that people with IDD need to meet their goals vary in intensity from intermittent to pervasive.

² Supported decision making (SDM) is a tool that allows people with disabilities to retain their decision-making capacity by choosing supporters to help them make choices. A person using SDM selects trusted advisors, such as friends, family members, or professionals, to serve as supporters. The supporters agree to help the person with a disability understand, consider, and communicate decisions, giving the person with a disability the tools to make her own, informed, decisions.” Supported Decision-Making: Frequently Asked Questions. https://www.aclu.org/wp-content/uploads/legal-documents/faq_about_supported_decision_making.pdf

³ Advance directive: Written advance directives include living wills and the durable power of attorney for health care. Living wills enable individuals to describe the treatment they would like to receive in the event that decision-making capacity is lost. The latter enables a patient to appoint a surrogate to make decisions if the patient becomes unable to do so (Ethics Manual, American College of Physicians, 2012.)

⁴ A surrogate decision maker is a person who makes health care decisions for an individual who is unable to make decisions about personal health care. A surrogate decision maker may be chosen by the individual in advance through an advance directive or by choosing an agent under a durable power of attorney for health care. A court-appointed guardian with authority to make health care decisions will also act as a surrogate decision maker. If there is no appointed surrogate, the law in most states permits health care practitioners to turn to next of kin as default surrogate decision makers. A growing number of states also authorize a close friend to act as default surrogate. Surrogates should include the individual in the decision making process as much as possible. All surrogates have an obligation to follow the expressed wishes of the adult person. If the individual’s wishes are not known, the surrogate must follow the person’s probable wishes, taking into account the person’s known values, and as a fall back to act in the person’s best interests. See Default Surrogate Decision Making, Pope, JD, PhD, Thaddeus, M., Mitchell Hamline School of Law, Reviewed/Revised Oct 2023, Merck Manual Consumer Version. https://www.merckmanuals.com/home/fundamentals/legal-and-ethical-issues/default-surrogate-decision-making

⁵ Informed consent has three elements: capacity of the consent-giver, information supplied to the consent-giver, and voluntary action by the consent-giver.

⁶ See generally, discussion of Legal Standard for Making Medical Decisions, Default Surrogate Decision Making, Pope, JD, PhD, Thaddeus, M., Mitchell Hamline School of Law, Reviewed/Revised Oct 2023, Merck Manual Consumer Version