Individuals with disability are a diverse group with varying characteristics. Among individuals dually eligible for Medicare and Medicaid, those with disability experience a higher prevalence of chronic conditions and poorer overall health compared to dually eligible individuals without disability.1 They are also less likely to receive recommended care and health screenings (e.g., for breast cancer, colorectal cancer, or diabetes).2 Services and care must also incorporate and support the individual’s expectations of independence and autonomy, as well as his or her participation in work, school, and community or social activities.
Disability-competent care (DCC) is a participant-centered model that focuses on providing care and supports for maximum function and addressing the barriers to integrated, accessible care for individuals with disability. DCC responds to the participant’s physical and clinical requirements, while also considering emotional, social, intellectual, and spiritual needs. DCC requires that health plans and providers understand the participant’s disability experience, the clinical diagnosis of the disability, and the functional limitations that individuals with disability may experience.
Applying the DCC model requires an understanding and appreciation of three core values:
1) Participant-centered approach recognizes the participants’ preferences, goals, and choices.
2) Respect for the participant’s choice and the dignity of risk,3 which honors and respects the participant’s choices even if they are inconsistent with health care recommendations.
3) Elimination of medical or institutional bias that may impede providers and plans from addressing the individual as a whole.
These three core values are supported by seven functional area pillars that form the foundational structure of the DCC model: 1) understanding DCC and disability; 2) participant engagement; 3) access; 4) primary care; 5) care coordination; 6) long-term services and supports (LTSS); and 7) behavioral health. These pillars are described in more detail below.
Resources for Integrated Care features resources to support providers and health plans in their efforts to apply the DCC model and deliver more integrated, coordinated care to dually eligible individuals with disability.
Understanding Disability-Competent Care (DCC) & Disability
As the number of individuals dually eligible for Medicare and Medicaid with disability continues to grow,4 it is important for health plans and providers to understand and apply the DCC model. The DCC model:
- Focuses on the individual needs of the participant, respecting the participant’s choices, and eliminating medical and institutional bias when providing care.
- Is a participant-centered model that focuses on supporting individuals to achieve maximum function. The model emphasizes the treatment of an individual as a whole person instead of solely focusing on the participant’s disability or clinical diagnosis.
- Is delivered by an interdisciplinary team (IDT) that aims to understand each participant’s unique disability and its functional impact on the participant.
Resources for Integrated Care offers resources to support health plans and providers in understanding the DCC model and how it is applied in practice.
4Centers for Medicare and Medicaid Medicare-Medicaid Coordination Office. (2019). Data Analysis Brief: Medicare-Medicaid Dual Enrollment 2006 through 2018. Retrieved from https://www.cms.gov/Medicare-Medicaid-Coordination/Medicare-and-Medicaid-Coordination/Medicare-Medicaid-Coordination-Office/DataStatisticalResources/Downloads/MedicareMedicaidDualEnrollmentEverEnrolledTrendsDataBrief2006-2018.pdf.
Participant engagement requires a person-centered approach to care and an understanding of the individual’s experience living with a disability. Participant-centered care is based on the recognition that a participant is the primary source for defining care goals and needs. The participant’s choices, preferences, and goals provide a foundation for his or her individualized plan of care (IPC). Engaging participants in life planning requires a relationship based on trust and respect between the participant and his or her care team, and is necessary to ensure decisions remain participant-centered. Resources for Integrated care features resources to support providers in better understanding the concept behind disability-competent participant engagement.
Dually eligible individuals with disability often face greater challenges accessing care and supports compared to dually eligible individuals without disability.5 Improving access in a health care setting requires understanding and addressing the barriers to care that may be experienced by the participant. Barriers can include negative attitudes; poor communication; lack of appropriate equipment; inadequate physical access; and insufficient navigation and coordination of services. Achieving competency in providing access includes recognizing the complexities of living with disability, being aware of disability-related biases, learning from participants, and paying attention to details. Removing barriers will enable participants and providers alike to realize desired health outcome(s) and quality of life. Resources for Integrated Care features resources to better understand the concepts behind disability-competent access.
5 Latterner, M., Carpenter, R., and Haile, E. (2019). How Does Disability Affect Access to Health Care for Dual Eligible Beneficiaries? Centers for Medicaid & Medicare Services, Office of Minority Health. Retrieved from https://www.cms.gov/About-CMS/Agency-Information/OMH/Downloads/Data-Highlight_How-Does-Disability-Affect-Access-to-Health-Care-for-Dual-Eligible-Beneficiaries.pdf.
Delivering disability-competent care (DCC) in a primary care setting is a team-based effort focused on prevention and aims to deliver a timely response to newly emerging episodes of illness. Primary care is a part of the interdisciplinary team (IDT) and involves a participant-centered approach to support individuals in achieving maximum function. In particular for participants with disability, primary care involves managing common secondary complications, preventing avoidable hospitalizations, and establishing protocols to facilitate successful transitions between providers and sites of care. Resources for Integrated Care features a variety of resources to better understand the concepts behind disability-competent primary care and how it is applied in practice.
Care coordination involves the implementation, management, and oversight for a participant’s individualized plan of care (IPC), which is based on the participant’s goals and preferences. Care coordination:
- Is provided by an interdisciplinary team (IDT) composed of persons with competencies in primary care, nursing, behavioral health, and social work or community-based services. Additional competencies may also be needed based on the population being served.
- Requires maintaining a trusting relationship with the participant.
- Involves frequently monitoring the participant’s medical and psychosocial conditions and including the participant’s perspective in care planning.
The outcome of care coordination is a clearly defined, collaborative path to the delivery of services in support of the participant’s goals and preferences. Resources for Integrated Care features resources to support providers in better understanding the concepts behind disability-competent care (DCC) coordination, leading practices and techniques for implementing care coordination, and how care coordination is applied in practice.
Long-Term Services and Supports (LTSS)
LTSS enables participants with disability to integrate and function within the community as they choose. LTSS includes home health supports, transportation, personal care attendants, behavioral health, long-term care, and nursing facility services, as well as informal community services or resources. Integrating LTSS into the participant’s individualized plan of care (IPC) can play a role in shifting the focus from a traditional medical model to a person-centered model. Resources for Integrated Care provides resources to better understand the concepts behind disability-competent LTSS and how it is applied in practice.
Behavioral health is an all-encompassing term that includes what has traditionally been referred to as mental health, substance abuse, and chemical dependencies. Integrating behavioral health within disability-competent care (DCC) requires effective communication with the participant, their family members, and other caregivers. It is important that behavioral health care be integrated with primary care to ensure continuity with the interdisciplinary team (IDT) and the participant’s individualized plan of care (IPC), as well as the delivery of services and supports. Establishing competency in identifying and addressing the behavioral health needs of participants with disability begins by establishing trust with the participant and addressing the fears and barriers they experience in accessing required care. Resources for Integrated Care offers resources to better understand the concepts behind disability-competent behavioral health
Physical Disability & Autism
Among individuals who are dually eligible for Medicare and Medicaid and under the age of 65, 2.5% have autism spectrum disorder (ASD).6 ASD is a group of complex neurodevelopmental disabilities that affect social communication, sensory processing, and scope of interests.
- These may impact the care management needs of adults with physical disability that are on the autism spectrum and may result in health care disparities.
- Compared to adults without autism, those on the autism spectrum experience greater unmet health care needs, greater emergency department use, lower use of preventative care services, lower satisfaction with participant-provider communication, and lower health care self-efficacy.7
- Adults with ASD may also experience fear and anxiety, sensory issues, and difficulty communicating with providers, which can result in additional barriers to accessing health care services.8
Resources for Integrated Care has developed resources to support providers in understanding the basics of autism and strategies to ensure the care management needs of those with ASD are met.
6 Centers for Medicare & Medicaid Services, Office of Minority Health. Autism Spectrum-Disorder (ASD) Disparities in Medicare Fee-For-Service Beneficiaries Data Snapshot; February 2021. Retrieved from https://www.cms.gov/About-CMS/Agency-Information/OMH/Downloads/OMH_Dwnld-DataSnapshot-Autism.pdf.
7 Nicolaidis, C, et al. (2013) Comparison of healthcare experiences in autistic and non-autistic adults: a cross-sectional online survey facilitated by an academic-community partnership. J Gen Intern Med. Jun; 28(6):7610769.
8 Raymaker, DM, et al. (2016) Barriers to healthcare: Instrument development and comparison between autistic adults and adults with and without other disabilities. Autism 21:8 972-984.
1 Latterner, M., Carpenter, R., and Haile, E. (2019). How Does Disability Affect Access to Health Care for Dual Eligible Beneficiaries? Centers for Medicaid & Medicare Services, Office of Minority Health. Retrieved from https://www.cms.gov/About-CMS/Agency-Information/OMH/Downloads/Data-Highlight_How-Does-Disability-Affect-Access-to-Health-Care-for-Dual-Eligible-Beneficiaries.pdf.
2 Office of the Assistant Secretary for Planning and Evaluation. (2016). Report to Congress: Social Risk Factors and Performance under Medicare’s Value Based Purchasing Programs. Retrieved from https://aspe.hhs.gov/pdf-report/report-congress-social-risk-factors-and-performance-under-medicares-value-based-purchasing-programs.
3 “Dignity of Risk” refers to the participant’s right to identify the need to be able to make an informed choice to experience life and take advantage of opportunities for learning, developing competencies and independence and, in doing so, take a calculated risk.