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IDD Health Outcomes that Matter: Community-Led Standards for Improvement

A  way to organize needed changes in healthcare to ensure the needs and preferences of people with IDD are prioritized.

About the Framework

The US lacks an approach for setting health priorities for people with intellectual and/or developmental disabilities (IDD) and supporting efforts to measure, improve, and hold clinical organizations and healthcare professionals, payers, and policymakers accountable for the well-being of the IDD population.

Understanding which health outcomes matter most to people with IDD and their care partners/givers serves as the first, essential step toward creating more effective insurance benefits; financing and payment for services; empowering the healthcare workforce to have accountability for priority outcomes; and developing tailored care models for people with IDDs.

Throughout 2022 and 2023, IIDDEAL (Individuals with IDD Engaged, Aligned, and Leading) project convened more than 180 contributors, including people with IDD, care partners/givers, clinicians, researchers, payers, and regulators to discover what health and life outcomes should be prioritized and how healthcare leaders can best support those outcomes.

An illustration of two people standing and facing each other -- on the left is a person in a red shirt using mobility aids, and on the right is a clinician in green scrubs holding a piece of paper.

Read about IDD Health Outcomes that Matter: Community-Led Standards for Improvement as published in the Journal of the American Medical Association and Disability and Health Journal.

Read the Article in JAMA
Read the disability and Health Journal

National Goals for 2035

The IDD Health Outcomes that Matter framework outlines 43 ambitious National Goals to achieve by 2035.

The goals address three major areas for improvement to disrupt current practices in: data collection and quality measurement, coverage and payment for services, and development of the clinical workforce and shared infrastructure. Some goals apply to multiple policy areas but were grouped based on the outcome domain or element that motivated the goal.

  1. Build methods to measure all outcomes that matter by making sure (a) structured data on disability status is standard and consistently included in health care records and claims; and (b) by finding and adapting existing metrics that align to outcomes that matter; and 3) by creating new metrics to fill gaps.
  2. Major patient experience surveys will include questions on:
    • Whether a person/family got all the information they need about pros and cons of different options to make decisions;
    • Whether they feel supported by the care team in having choices through shared or supported decision-making;
    • Whether they were able to exercise shared or supported decision-making;
    • Whether the care team asked the person/family about what is most important to them;
    • Whether the person/family felt that the care team did the best they could to honor their wishes;
    • Whether the person/family felt that the care team took their concerns and opinions seriously.
  3. Major patient and caregiver/partner surveys will define care coordination and include questions on:
    • Whether a person or caregiver/partner feels their care was well coordinated;
    • Whether a person that transitions from one care setting to another feels care teams were aligned;
    • Whether a person or caregiver/partner has a bad outcome because of poor coordination.
  4. The major patient experience surveys include questions on whether patients feel their healthcare provider:
    • Treated them with respect and presumed ability;
    • Provided accommodations and used preferred forms of communication;
    • Honored their goals;
    • Made them feel welcome.
  5. Payers and regulators are consistently measuring elements of strong primary care, including person-centered primary care; continuity (relationship over time); comprehensiveness (able to provide most of what a patient needs in one place); and trust.
  6. All healthcare plans are required to report data on putting person-centered outcome measures into place – reported at health-plan level with national benchmarks.
  7. People with IDD and their care partners/givers will reach agreement on a definition of life situations that effect health and set standards for collecting related data in electronic health records (EHRs).
  8. EHRs will add ways to routinely capture information on:
    • How a person with IDD or support team signals a change in pain or energy;
    • Pain and energy assessments based on new standards and/or in-depth examinations to identify physical causes;
    • Clear instructions for doctors and nurses to give to each IDD patient and their helpers. These instructions explain:

      When to tell the medical team about changes in pain
      When to tell the medical team about changes in energy levels

      These instructions are made specific for each patient, not just general advice.
  9. A new national standard for electronic health records is established and the three largest EHR companies will include a question in the person’s medical record for answers to the question, “Are you a caregiver?” and capture a range of types of caregiving, such as whether they require help so they can have a break.
  10. 75% of care partners/givers will have a clear plan for taking breaks from care as part of the longterm care plan or complex care plan in the electronic health record of their person with IDD.
  11. A new national standard for electronic health records is established and put into place by the three largest EHR companies to include a new structured field to capture a patient’s broad goals and what they would like to accomplish in the visit. Alternatively, more consistent use of existing “goals” fields in EHRs would capture longer-term priorities than “reason for visit” fields.
  12. When people with IDD move from child to adult healthcare (usually between ages 14-26):

    Half of these people and their caregivers will write down in their health records:

    --How they're connecting with services
    --What services they need or want
    --Which family members are involved in their care
    --A plan for emergencies

    They should update this plan at least every five years.

    This helps make sure that as young people with IDD become adults, there's a clear record of their care needs and preferences to guide their ongoing healthcare.
  1. Medicaid in all states will expand dental coverage for adults with IDD or other disabilities to include extensive coverage, which includes more frequent preventive visits, interventions, and payment for longer visits.
  2. Public and private health insurance companies offer new or enhanced benefits for children and adults with IDD or other disabilities. Those benefits include health, vision, and dental coverage (eg, more frequent preventive visits and payment for visits that last more than one hour).
  3. In the next five years, IDD advocates will identify at least two policy levers (eg, mental health parity laws, designations of underserved populations; law enforcement policies) to make integrated mental/physical care available to and effective for people with IDD.
  4. Centers for Medicare & Medicaid Services (CMS) funds 1,115 waivers for housing benefits via short-term Medicaid rent assistance in at least 10 states that support people experiencing food insecurity, housing insecurity, or people who are economically and medically vulnerable.
  5. Medicare, Medicaid in 25 states, and the three largest insurers provide coverage for technology tools to enhance safety and health in the home.
  6. Medicare, Medicaid in 25 states, and the three largest insurers offer healthcare professionals extra payments to address the specific things in a person's life and environment that impact their health, like their housing, job, education, access to food, and social connections. These factors can be different for each person.
  7. CMS or five states test a new program in Medicare and/or Medicaid. This program uses personalized health and life plans to address the life situations that affect each person's health.
  8. 100% of individuals with IDD who have experienced sexual assault or trauma, regardless of disability, are supported and provided accommodations to access all appropriate mental health and other services.
  9. Medicare, Medicaid, and the three largest insurers will provide universal coverage for sexual assault treatment, including reproductive, physical/dental, and mental health after-effects to people with IDD.
  10. Medicare, Medicaid in 25 States, and the three largest private insurers all include people with IDD on advisory councils, workgroups, and other stakeholder meetings, and support them to meaningfully lead or co-lead the design of programs and policies serving people with IDD.
  11. To improve how we pay for healthcare based on patients' experiences, the main surveys that ask about patient experiences must be: 

    --Easy to understand and use for people with IDD
    --Private for people with IDD
    --Accessible to people who:
    -------Use devices to help them communicate
    -------Need simple language
    -------Prefer pictures or illustrations
    -------Prefer to listen rather than read
  12. Medicare, Medicaid in 25 states, and the three largest insurers will offer coverage for key services located in the same place, for example, mental health included into primary care; dental and primary care).
  13. Medicare, Medicaid in half the states, and the three biggest insurance companies will pay for a staff person at clinics who will make it easier for people to get the care and support they need. This helper will:

    Be independent (not part of the regular healthcare team)
    Help with both medical needs and community services
    Assist people as they go through different life stages
  14. Medicare, Medicaid in 25 States, and the three largest private insurers pay more to clinicians who spend more time with people with IDD, which may include spending time with care partners/givers when they attend visits.
  15. Federal agencies or other national organizations, in collaboration with community members, will develop a plan for an online, searchable database with community resources organized by areas of need, including emergency services.
  1. The federal government designates people with IDD as a medically underserved population and offers incentives for clinicians to serve this community.
  2. At least 25 states require a certification/continuing education program for primary care and mental health professionals on how to serve people with IDD with co-occurring mental health and substance use disorders based on their preferred way of receiving help, emphasizing the value of self-determination.
  3. Twenty-five states identify resources for and support the development of a qualified workforce through the implementation of a psychiatric/mental health consultation or co-location model, especially for primary care professionals (eg, ECHO model).
  4. General principles of accessible, empowering, non-stigmatizing, and trauma-informed care are integrated into how healthcare and other service professionals are trained, including via direct experience with people with IDD and care partners/givers.
  5. Create a clinician certification on person-centeredness, respect for persons, and presumption of ability/assent/consent that rewards clinicians for using these concepts.
  6. The accrediting and licensing boards in all healthcare professions will include IDD content at all ages in at least 10% of requirements, some of which may be IDD-focused, and some of which may address common conditions that people with IDD have.
  7. All students training to become health professionals must learn about caring for people with IDD before they can get their license. This training will:

    Cover topics important to people with IDD and their caregivers
    Include community experts as teachers
    Provide hands-on experiences with IDD patients
    Teach students to use tools that help improve care for people with IDD, such as:
    --Communication devices
    --Remote healthcare services (telehealth)

    This ensures future health professionals are better prepared to work with IDD patients.
  8. Increase 10x the number of healthcare and dental practitioners who have IDD.
  9. 50% of primary care clinicians and reproductive health clinicians routinely screen and provide developmentally appropriate resources and/or education about basic sexual, reproductive, gender, and parenting support to people with IDD at all ages.
  10. 100% of public high-school youth with IDD are required to be included in the standard health curriculum.
  11. Each state establishes and maintains a directory of in-person and/or online self advocate peer support groups that qualify to receive payment by payers and regulators, including in rural and urban areas. 
  12. Development of a technology solution to address data sharing across different types of care, including but not limited to educational, medical, dental, and community care.
  13. --Ask community members to identify five main areas where current solutions aren't working well for people with IDD.
    --Invest money to create new solutions for these five areas.
    --The amount of money invested should match how important and urgent each problem is to people with IDD, their families, insurance companies, and doctors and other healthcare providers.
    --Develop these new solutions and tools together with people with IDD, their families, universities, insurance companies, doctors and healthcare providers, and government agencies.
    --Use online platforms where people can share their personal experiences to help create these solutions.

    This approach ensures that the most pressing needs are addressed, with input from all involved parties, especially those directly affected by IDD.
  14. Make easy-to-use central databases that contain information on:

    How well different payment methods work
    How effective various care models and services are
    How useful different interventions and tools are

    These databases will show the benefits and financial returns of each approach.

    Different groups (like patients, doctors, or insurance companies) might define "value" in different ways, and the database will reflect this.

    This information will help people make better decisions about healthcare for IDD.
  15. Production of at least 30 national press stories, television shows, movies, national social media campaigns, advertisements by national companies, foster/adoptive agencies, and/or other major media releases that positively demonstrate people with IDD as parents, and promote influencers with IDD.
  16. Improve and expand existing parenting classes for people with IDD. This will be done by a group that includes government agencies, community members (including IDD parents who can mentor others), hospitals and birthing centers, and community organizations.

    The improved parenting classes will be used by at least one-quarter of birthing centers, hospitals, pregnancy care practices, independent birthing professionals, and state agencies that offer parenting resources.

    This ensures more people with IDD have access to helpful parenting information and support.

National Goals Open for Public Feedback Through September 30, 2024

We value our community’s input. Please submit your comments, suggestions, or questions using the form below. All comments received by September 30, 2024, will be reviewed and considered. We will summarize and respond to common themes across the comments received.

COMING SOON: HEALTH OUTCOME DOMAINS AND PRIORITY ELEMENTS

We will be sharing the nine Health Outcome Domains and 29 Priority Elements outlined in the Framework later in 2024.

Critical Next Steps

  • Building a standardized set of data on people with IDD.
  • Creating data tools to better identify people with IDD.
  • Building coalitions of diverse patient advocacy groups (eg, people with IDD, those who are frail and/or elderly, patients with cancer, ideally of diverse races and cultures) that would benefit from new ways to measure progress, so we can convince the government and other groups to provide money and support policies that match our goals.
  • Reviewing currently available quality performance measures to identify gaps.
  • Defining the testing needed to develop and validate new measures.
  • Engaging other key policymakers and partners, including the Office of the National Coordinator on Health Information Technology.
  • Making a plan to ensure hospitals and clinics are responsible for their results. This could include rewarding them with money for good performance or making their results public once we have ways to measure how well they're doing.
  • Federal designation of people with IDD as a medically underserved population to increase access to health care professionals and steer greater resources to clinical organizations serving this population.
  • Payment for community-based organizations to become routine members of health care teams.
  • Rewards for doctors, nurses, and hospitals to make sure people with IDD actually get the help they're referred to. This means not just recommending services, but making sure people with IDD actually receive the social or other support they need.
  • Eliminating wait lists for Home and Community Based Services (HCBS) and other Medicaid-funded IDD services, and/or making sure that people with the most urgent needs get access first.
  • Reducing the administrative burden on clinical organizations and health care professionals so they can focus on care relationships and solving problems.
  • Ensuring a safety net of services and support for when care partners/givers age or die.
  • Developing and implementing campaigns targeting clinicians in practice and those in training to drive culture change through acquisition of basic skills in serving people with IDD.
  • Finalizing a national data definition of IDD for consistent application in research, clinical care, and financing/payment policies.
  • Investment in centralized data sources on people with IDD.
  • Engagement with the IDD community, technology developers, and other healthcare partners to identify key gaps in care where new technology solutions could be most valuable and effective.

Framework Highlights