A young man with disabilities in a wheelchair uses an ATM with the assistance of a woman
Support Coordination/in /by
Support coordination is critical for finding and coordinating the necessary services, supports, and resources within the community that are required by children and adults with intellectual and/or developmental disabilities1 (I/DD) and their families.

ISSUE

People with intellectual and/or developmental disabilities and their families often have a hard time finding and coordinating the services, supports, and resources they need to ensure a high quality of life and full inclusion in the community. Service systems can be complex, challenging to navigate and are often critically underfunded. Determining funding sources for necessary services can be extremely difficult.

In many areas of the country, resources for support coordination, also referred to as service coordination, are limited or have restrictive financial or diagnostic eligibility criteria. Some support coordinators have large “caseloads” with more people than they can fully serve. There may be high staff turnover. Support coordinators may not be aware of universal and natural support systems that are available to all citizens.

POSITION

People with intellectual and/or developmental disabilities and their families must have ongoing access to effective, responsive, affordable, reliable, and culturally appropriate individual service coordination as needed.

As support coordinators help design, coordinate, and monitor supports and services, they must:

  • Follow the wishes and needs of each individual through a person-centered planning process;
  • Enable people to explore a full range of options, to include provider options, then identify and access appropriate services and supports;
  • Develop formal and informal supports (i.e., circles of support) around the individual rather than try to fit the person into existing services because of availability. Informal supports are natural supports such as family, friends, co-workers, and neighbors;
  • Represent and advocate for the interests, preferences and dreams of the individual and, when appropriate, the family;
  • Assist individuals and families in independently coordinating their own supports and services if they so desire, and in hiring someone of their choice;
  • Be free from conflicts of interest;
  • Support the development and expression of self-determination and self-advocacy; and
  • Share information about desired supports and services as well as system gaps with funders so that systems become more responsive to people’s desires and needs.

Support coordination must be funded at a level that supports an appropriate caseload. Support coordinators must be provided with ongoing skills development; opportunities to build capacity through peer networks; and equipped with up to date, unbiased knowledge of community resources.

 

Rev’d 2015
Joint statement with the American Association on Intellectual and Developmental Disabilities (AAIDD).

1“People with intellectual disability and/or developmental disabilities” refers to those defined by AAIDD classification and DSM IV. In everyday language, they are frequently referred to as people with cognitive, intellectual and/or developmental disabilities although the professional and legal definitions of those terms both include others and exclude some defined by DSM IV.

Two stacks of paper and folders against a black background
Research/in /by
Basic and applied research1 on the causes, challenges and treatment of intellectual and developmental disabilities2, as well as research on interventions and services which could improve the lives of people with intellectual and/or developmental disabilities, must be adequately financed, well designed, focused on relevant topics, conducted with the highest ethical standards, presented in formats accessible to multiple audiences, and have a positive impact on people’s lives.

ISSUE

Government and private funding is insufficient to support the broad research agenda that includes issues most important to people with intellectual and/or developmental disabilities and their families. Through basic and applied research, scientists and researchers can learn about causes of intellectual and/or developmental disabilities, address its preventable causes, improve the quality of life of people with intellectual and/or developmental disabilities and their families, and address policy and service- delivery enhancements. Researchers can identify the most promising educational, social and clinical interventions that help people live meaningful lives.

Historically, most people with intellectual and/or developmental disabilities and their families have not had input into the design, methodology, dissemination, use, and evaluation of research. Moreover, most research results have not been presented in ways which are accessible, understandable and useful for multiple audiences, including people with intellectual and/or developmental disabilities and their families.

Few groups are more vulnerable to potential exploitation in research than individuals with intellectual and/or developmental disabilities. Without comprehensive, clear policies, standards and safeguards in place to protect them, people with intellectual and/or developmental disabilities may be subject to exploitation and harm.

POSITION

To make applied and basic research related to intellectual and/or developmental disabilities a national priority, the following must occur:

  • Government and private entities must provide adequate funding to support research;
  • Advocacy, service provider and professional organizations, government agencies, the research community, and people with intellectual and/or developmental disabilities and their families must work together in defining, evaluating, and promoting a research agenda;
  • Results of research must be available in multiple formats, easily accessible and understandable for a wide audience, including people with intellectual and/or developmental disabilities and their families;
  • Stringent scientific and ethical standards must be enforced to ensure efficient and effective use of limited research funds and to prevent exploitation or harm of people with intellectual and/or developmental disabilities and members of their families; and
  • For all basic and applied research involving persons with intellectual and/or developmental disabilities:
    • Specific procedures must be implemented to ensure their full voluntary, informed, initial, and ongoing agreement to participate;
    • All research must be conducted by qualified researchers, in adequately monitored settings and reviewed for potential risk and benefit by qualified, competent scientific review boards;
    • No research may be conducted exclusively on persons with intellectual and/or developmental disabilities unless there is reasonable likelihood that the treatment would address unique intellectual and/or developmental disabilities medical issues or apply differentially to them; and
    • Persons with intellectual and/or developmental disabilities should not be excluded from research that might benefit them as members of the general population.

Entities involved in conducting and financing basic and applied research should ensure that policies and standards with specific guidelines and safeguards are in effect to protect persons with intellectual and/or developmental disabilities and their families.

The Arc and AAIDD are committed to identifying and promoting research-based best practices, setting high standards for direct services and measuring outcomes across all three levels of the organization (local, state, and national).

 

Rev’d 2015
Joint statement with the American Association on Intellectual and Developmental Disabilities (AAIDD).

1Basic research refers to the study and research of pure science that is meant to increase the scientific knowledge base. Applied research refers to scientific study and research that seeks to solve practical problems and develop innovative approaches.

2“People with intellectual disability and/or developmental disabilities” refers to those defined by AAIDD classification and DSM IV. In everyday language, they are frequently referred to as people with cognitive, intellectual and/or developmental disabilities although the professional and legal definitions of those terms both include others and exclude some defined by DSM IV.

A caregiver holds a fork with food up to a seated woman who is smiling
Long Term Supports and Services/in /by
All people with intellectual and/or developmental disabilities1 (IDD) have the right to full lives in communities of their choosing where they can live, learn, work, and enjoy life. To achieve this, people with IDD need access to comprehensive, person-centered and self-directed high quality long term supports and services (LTSS). Robust, reliable, and immediately accessible funding sources that include Medicaid are needed. There must be a flexible public policy framework that emphasizes self-direction, is well-funded, responsive, and nimble, and is developed with—and not for—people with IDD. Waiting lists for home and community-based supports and services must be eliminated.

ISSUE

A variety of barriers to ensuring that people with IDD receive the LTSS required to live their fullest life in communities of their choice continue to exist. These include:

  • Insufficient Medicaid funding;
  • Institutional bias in the Medicaid program;
  • Continued and worsening crisis of unmet need; and
  • Persistent and worsening workforce crisis.

Insufficient Medicaid Funding

Medicaid has been the major funding source for all LTSS for people with IDD for decades. Medicaid is also under constant political threat, creating anxiety, confusion, and compromising the well-being of people with IDD and their families.

The persistent lack of a system of comprehensive community LTSS is a crisis requiring immediate solutions. Individuals and families are forced to navigate a patchwork of systems of supports and services that are complex and frequently uncoordinated; are limited and often diminishing in scope and relevance; and, are difficult to access and offer no clear path to assistance. Medicaid is means-tested, is not portable across state lines, differs—often dramatically—from state to state, and does not meet the demand for community-based LTSS for people with IDD of all ages.

Many individuals and families experience extraordinary hardships due to a lack of services and supports. Many people with IDD are living at home with a caregiver of retirement age. Family caregivers play a critical role in providing uncompensated supports and services. Many family caregivers are forced to leave employment to provide services that their family member may need because that is their only option. Relying on families to provide support cannot be a substitute for creating a systemic solution to ensure that everyone with IDD who needs LTSS receives them.

Institutional Bias of Medicaid

Making choices and self-directing one’s life with the assistance they may need should be an expectation for all people. However, most individuals with IDD are not given opportunities or supports to make and/or execute choices and decisions, or their choices have been ignored. It is important that self-direction includes the ability to select and dismiss the people who provide supports and services, and to have control over funding. Ensuring the system of LTSS is self-determined and person-centered and directed is critical to having a system of individualized supports for people with IDD. Too often decisions about supports and services are based on availability and cost, not on the person’s choices made independently of the self-interests of the funder and/or service provider. Many people either accept supports and services that are available but inappropriate and/or inadequate, or receive no supports at all.

While most LTSS for people with IDD are community-based, a Medicaid institutional bias, based in the antiquated medical model of care, continues to exist. This means that institutional services (such as nursing homes) are mandatory under federal law, while community-based supports and services are optional. In addition, in many states, existing Medicaid services fall short of meeting the full needs of people with IDD, requiring continued advocacy to ensure ease of access to necessary, community-based services and supports.

To become or remain eligible for vital Medicaid-funded LTSS, most people seeking services are forced to impoverish themselves and remain poor for a lifetime. Program changes designed primarily to reduce costs rather than improve or expand supports and services are emerging in greater numbers of managed care state LTSS systems. This shift has, in a number of states, resulted in greater barriers to accessing LTSS.

Continuing and Worsening Crisis of Unmet Need

People waiting for LTSS is unacceptable. Individuals with IDD remain on waiting lists for years—in some states for a decade or more—after requesting and being determined eligible for necessary supports and services. If ongoing supports and services are not available to young adults with IDD transitioning out of the education system, educational gains are lost, as are opportunities to launch careers and achieve independence.

People with disabilities often must experience the death of a parent, a medical emergency, or other tragic event to obtain the supports they need. They are thus thrust into a new situation without planning at a time of crisis.

As people with IDD continue to seek supports in their communities, access to affordable housing in safe neighborhoods has emerged as an urgent need. Because Medicaid eligibility for individuals with IDD often requires them to impoverish themselves, even generally available affordable housing programs are frequently inaccessible to them.

Direct Support Professional Workforce Crisis

The quality and effectiveness of LTSS for people with IDD depends upon qualified providers of supports and services with adequate skills and training. Inadequate compensation hampers both recruitment and retention of direct support professionals (DSP). Insufficient funding to support livable wages for DSPs, and for training of DSPs and their supervisors, negatively impacts the quality of supports available to people with IDD, as well as the success that individuals have in living the life they choose in the community.

POSITION

A comprehensive system of LTSS must include the following:

  • An LTSS system that is sustainable and enables all eligible individuals to obtain LTSS whenever needed;
  • A system that includes private and public funding mechanisms for LTSS, as a shared, societal responsibility;
  • Elimination of the need for individuals or their families to impoverish themselves to receive supports and services;
  • Services which are portable and allow people who move from one state or political jurisdiction to another to receive uninterrupted, self-directed supports;
  • Medicaid as a viable funding option for individuals who need LTSS and have no or limited access to private insurance options;
  • Medicaid buy-in options that are available in all states to allow people to preserve their eligibility for Medicaid-financed supports while encouraging careers, savings, and wealth-building;
  • Medicaid programs that enable people to participate fully in their communities, experience a quality of life they define, and achieve economic security and personal independence;
  • Medicaid funds that are controlled, to the fullest extent possible, by the person;
  • Medicaid funding that is redirected from institutional care to person-centered home and community-based supports that are delivered in natural community environments;
  • Improvements to Medicaid to ensure access to self-directed and determined LTSS, consistently deliver better outcomes for more people with IDD, and eliminate waiting; and
  • Medicaid service delivery system redesign that is transparent and involves meaningful input of all stakeholders.

Self-Direction

Access to adequate and appropriate supports and services needed to live in the community is a basic human right. To achieve this:

  • Individuals must design and direct their own services, to the fullest extent they wish and with the assistance they want;
  • Services must be person-centered and based on the unique needs and desires of the individual, accompanied by measured progress toward person-centered outcomes to which the person aspires;
  • Individuals with IDD who wish to employ DSPs must have access to timely and relevant information, technical assistance, and training;
  • Services must be delivered promptly to meet individual needs and desires in the most integrated setting, with flexible funding to meet changing circumstances; and
  • Outcome measures, defined in substantial part by the person, and outcomes consistent with state-defined value based reimbursement systems should be used to measure the individual and systems outcomes of LTSS in every state.

Continuing and Worsening Crisis of Unmet Need

  • Individuals who are eligible for and want LTSS should not have to wait to receive services;
  • Public systems must actively reach out to individuals and to families with un- and under-met needs to make them aware of the process for obtaining LTSS and must maintain transparency until waiting is eliminated;
  • People must receive crucial supports that assist them while they wait for comprehensive community supports and services; and
  • Until waiting is eliminated, states must develop systems to prioritize delivery of services to individuals who are waiting for services on the waiting list to ensure that those experiencing emergencies (loss of caregiver, imminent threat of institutionalization) receive person-centered and self-directed supports and services immediately.

Direct Support Professionals Workforce Crisis

  • System funding must provide for living wages and benefits to DSPs;
  • Wages, benefits, and professional development opportunities remain consistently insufficient and must improve to attract and retain the workforce needed to fully support people living in the community;
  • Competency-based training must be available to DSPs that covers the essential knowledge, ethical principles and practices, and skills necessary to provide direct support;
  • National, state, and local private and public entities must engage in policy initiatives to recruit, train, and retain a high quality DSP workforce;Federal and state quality assurance programs must incentivize DSP retention and competence as part of licensure, in order to recognize positive performance and to direct assistance to those programs with unacceptable performance; and
  • States must utilize a Nation-wide system for criminal and related background checks, including a system for tracking people for whom abuse, neglect, and exploitation charges have been substantiated, for all public and private DSPs working in the state.

 

Rev’d 2020
Joint statement with the American Association on Intellectual and Developmental Disabilities (AAIDD).

1Intellectual 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.

A young boy with disabilities looking at the camera with a classroom setting behind him
Addressing the Causes and Effects of Intellectual and Developmental Disabilities/in /by
According to the Developmental Disabilities Assistance and Bill of Rights Act (DD Act) and other federal legislation, “disability is a natural part of the human experience…” Prevention activities do not diminish the value of individuals with intellectual and/or other developmental disabilities1 (I/DD), but rather strive to maximize the independence and enhance quality of life for people with I/DD. The Nation must continue to investigate the causes, avoid those that are preventable, and limit negative effects of conditions that cause I/DD through basic, applied, and clinical research, public awareness, education, advocacy, early intervention, and appropriate supports.

ISSUE

Knowledge about biomedical causes of disability, preventive health care options, and the consequence of exposure to environmental hazards is increasing rapidly, yet practical application of this information is lacking. Supporting the prevention of I/DD and valuing the lives, diversity, and contributions of persons with I/DD are compatible positions.

Despite dramatic advances in our Nation’s view of disability and supports and services for individuals with disabilities, quality of life remains elusive for far too many persons with I/DD. When individuals with I/DD do not receive adequate, comprehensive health care, including access to mental health, habilitative and dental health services across the lifespan, therapies, education, and access to assistive technology, preventable secondary conditions can occur.

POSITION

The Nation must investigate the causes, avoid those that are preventable, and limit the negative effects of conditions that cause I/DD through prevention programs, policies, and practices which must include:

Research

  • Research on the conditions that cause I/DD, including, but not limited to, biomedical causes of disability, preventive health care options, and the consequence of exposure to environmental hazards.

Public Health Programs

  • Promotion of folic acid supplementation among women of child-bearing age, with emphasis in communities where the incidence of neural tube defects is higher;
  • Efforts to prevent accidental childhood injuries, such as programs to promote the use of car seats, seatbelts, and bicycle and other sports helmets;
  • Compliance with state laws on immunizations of children for preventable contagious diseases associated with I/DD to achieve public health objectives and optimal health outcomes;
  • Encouragement of immunizations for women of child-bearing age for preventable contagious diseases that are associated with I/DD;
  • Programs to ensure that prospective parents and pregnant women have coverage for and access to comprehensive prenatal care to support the best possible birth outcomes. In the case of mothers with I/DD, such care must meet the mother’s disability and communication needs;
  • Disability sensitive information and supports for post-natal care for mothers with I/DD;
  • Programs to ensure that pregnant women (including those with I/DD), infants, and children receive adequate nutrition and healthcare;
  • Information and care before, during, and following birth, including frequent physical/ developmental checks, and referral to community resources, if appropriate;
  • Programs to ensure that children who live in poverty have access to adequate health and development support;
  • Education of professionals and the public on the risks of prenatal and childhood exposure to agents that may harm brain development, such as alcohol, drugs, tobacco, polychlorinated biphenyls (PCBs) and environmental hazards such as lead and mercury. In addition, professionals, families, and self-advocates should be made aware that individuals with I/DD who experience compromised health or limited access to healthcare may be uniquely vulnerable to environmental hazards;
  • Reduced exposure to and protection against infectious agents and environmental hazards known to cause or contribute to I/DD, such as insect-borne diseases like the Zika virus, and lead, mercury, and polychlorinated biphenyls (PCBs), as well as improved workplace safety initiatives;
  • Programs and education to reduce the incidence of disabilities resulting from child abuse, particularly Shaken Baby Syndrome;
  • Expansion of newborn screening and early childhood developmental screening programs to identify conditions that require specialized medical treatment at birth or soon after, and to provide for timely referral to early intervention services. Such programs should be modeled on the highly successful efforts to prevent I/DD resulting from PKU and hypothyroidism; and
  • Enforcement of existing public policies designed to prevent I/DD.

Quality of Life

Investigating the causes, avoiding those that are preventable, and limiting negative effects of conditions that cause I/DD will contribute to individual and family quality of life. It is also imperative that individuals with I/DD engage in person-centered and self-directed services and supports that are appropriate and affordable in order to improve quality of life, as well as to address secondary conditions through the following:

  • Appropriate funding for interventions, preventive health care, habilitation services, educational services, community-based supports, and assistive technology to maximize independence and lessen the development of preventable secondary conditions in people with I/DD who often are at greater risk for health problems that can be prevented;
  • Proactive efforts in policy development and program design to identify and prevent health disparities and the development of secondary conditions in persons with I/DD;
  • Continued research into and application of promising interventions, best practices, and community-based supports that maximize independence and enhance quality of life for individuals with intellectual and/or developmental disabilities; and
  • Dissemination of knowledge about research-based best practices.

 

Rev’d 2016
Joint statement with the American Association on Intellectual and Developmental Disabilities (AAIDD).

1“People with intellectual disability (ID)” refers to those with “significant limitations both in intellectual functioning and in adaptive behavior as expressed in conceptual, social, and practical adaptive skills. This disability originates before age 18,” as defined by the American Association on Intellectual and Developmental Disabilities (AAIDD) in its manual, Intellectual Disability: Definition, Classification, and Systems of Supports (Schalock et al., 2010), and the Diagnostic and Statistical Manual of Mental Disorders, 5th Edition (DSM-5), published by the American Psychiatric Association (APA, 2013). “People with developmental disabilities (DD)” refers to those with “a severe, chronic disability of an individual that- (i) is attributable to a mental or physical impairment or combination of mental and physical impairments; (ii) is manifested before the individual attains age 22; (iii) is likely to continue indefinitely; (iv) results in substantial functional limitations in 3 or more of the following areas of major life activity: (I) Self-care, (II) Receptive and expressive language, (III) Learning, (IV) Mobility, (V) Self-direction, (VI) Capacity for independent living, (VII) Economic self-sufficiency; and (v) reflects the individual’s need for a combination and sequence of special, interdisciplinary, or generic services, individualized supports, or other forms of assistance that are of lifelong or extended duration and are individually planned and coordinated,” as defined by the Developmental Disabilities Assistance and Bill of Rights Act 2000. In everyday language, people with ID and/or DD are frequently referred to as people with cognitive, intellectual and/or developmental disabilities.

Aerial photograph of a caregiver pushing a woman in a wheelchair over grass
Systems Summary/in /by
Systems are necessary to support people with intellectual and/or developmental disabilities1 and their families to enable them to live their lives like other people. These support systems must be of high quality and focused on the people and their families, not the staff.

ADDRESSING THE CAUSES AND EFFECTS OF INTELLECTUAL AND DEVELOPMENTAL DISABILITIES

According to the Developmental Disabilities Assistance and Bill of Rights Act (DD Act) and other federal legislation, “disability is a natural part of the human experience…”. Prevention activities do not diminish the value of individuals with intellectual and/or other developmental disabilities (I/DD), but rather strive to maximize the independence and enhance quality of life for people with I/DD. The Nation must continue to investigate the causes, avoid those that are preventable, and limit negative effects of conditions that cause I/DD through basic, applied, and clinical research, public awareness, education, advocacy, early intervention, and appropriate supports.

LONG TERM SUPPORTS AND SERVICES

Individuals with intellectual and/or developmental disabilities (I/DD) deserve the opportunity for a full life in their community where they can live, learn, work, and socialize. To achieve this goal, they need a comprehensive, person-centered and directed, national system of appropriate high quality long-term supports and services (LTSS), with a reliable and immediately accessible funding source, including Medicaid, and a well-trained, fairly compensated workforce of providers and direct support professionals. Waiting must be eliminated.

RESEARCH

Basic and applied research on the causes, challenges, and treatment of intellectual and developmental disabilities, as well as research on interventions and services which could improve the lives of people with intellectual and/or developmental disabilities, must be adequately financed, well designed, focused on relevant topics, conducted with the highest ethical standards, presented in formats accessible to multiple audiences, and have a positive impact on people’s lives.

SUPPORT COORDINATION

Support coordination is critical for finding and coordinating the necessary services, supports, and resources within the community that are required by children and adults with intellectual and/or developmental disabilities and their families.

 

1 “People with intellectual disability (ID)” refers to those with “significant limitations both in intellectual functioning and in adaptive behavior as expressed in conceptual, social, and practical adaptive skills. This disability originates before age 18”, as defined by the American Association on Intellectual and Developmental Disabilities (AAIDD) in its manual, Intellectual Disability: Definition, Classification, and Systems of Supports (Schalock et al., 2010), and the Diagnostic and Statistical Manual of Mental Disorders, 5th Edition (DSM-5), published by the American Psychiatric Association (APA, 2013). “People with developmental disabilities (DD)” refers to those with “a severe, chronic disability of an individual

that- (i) is attributable to a mental or physical impairment or combination of mental and physical impairments; (ii) is manifested before the individual attains age 22; (iii) is likely to continue indefinitely; (iv) results in substantial functional limitations in 3 or more of the following areas of major life activity: (I) Self-care, (II) Receptive and expressive language,

(III) Learning, (IV) Mobility, (V) Self-direction, (VI) Capacity for independent living, (VII) Economic self-sufficiency; and (v) reflects the individual’s need for a combination and sequence of special, interdisciplinary, or generic services, individualized supports, or other forms of assistance that are of lifelong or extended duration and are individually

planned and coordinated,” as defined by the Developmental Disabilities Assistance and Bill of Rights Act 2000. In everyday language people with ID and/or DD are frequently referred to as people with cognitive, intellectual and/or developmental disabilities.