Q&A with Sonya Karpiak Bowen: Improving Care for Medicare Beneficiaries with Disabilities

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Photo of Sonya Karpiak Bowen, CMS
Sonya Karpiak Bowen, CMS

Sonya Karpiak Bowen joined the Centers for Medicare & Medicaid Services (CMS) in 1994 and its Office of Minority Health (OMH) in 2015, initially as a special assistant to the deputy director, and currently as a health insurance specialist. Her primary responsibilities include advancing program incentives to increase physical accessibility in health care settings, targeting analyses of high risk, high needs subgroups of dually Medicare-Medicaid eligible beneficiaries within CMS’s Financial Alignment Initiative evaluation, and supporting culturally and linguistically appropriate services in nursing homes under the Health Equity Innovation Incubator. Bowen previously worked on the development and oversight of state Medicaid home- and community-based services (HCBS) programs for disabled and elderly individuals in the Center for Medicaid and CHIP Services.

Q: How does your background apply to your current role at CMS OMH?

I like to tell people that the mission of CMS OMH is the perfect combination of public health and social justice, which complements my background in medical sociology and macro-level social work. I’ve had the privilege during the course of my career to continuously learn from beneficiaries and their families and caregivers, the providers who care for them, health care researchers, and countless CMS colleagues who are sincerely passionate about making a positive difference in everyday lives. My role as the disability lead in the Program Alignment and Partner Engagement Group is a natural fit for my personal and professional values. 

Q: Overall, how does CMS OMH work to increase access to and quality of care for people with disabilities?

Our office partners across CMS components, including regional offices, to embed health equity into agency programs. As more people are recognizing people with disabilities as a distinct minority health population, we are able to use research and program data to increase understanding of where disparities exist, including at the intersection of other minority groups (e.g., race and ethnicity). We then build relationships with components whose work impacts this population, either directly or indirectly, to incorporate a disability lens in developing health equity solutions, and implementing action. CMS components and regional offices also reach out to CMS OMH for our health equity expertise.

Q: Does the planning and implementation of your work include person and family engagement? If so, how?

Person and family engagement is critical to the success of CMS OMH’s work. If we limit our conversations to providers, researchers and our federal colleagues, there’s no way for us to have a complete picture. Similar to our other health equity priorities, we hold listening sessions with beneficiaries and their families and caregivers, as well as other disability advocates. We will be holding another listening session on increasing physical accessibility in health care facilities this summer and will include representation from beneficiaries and families, as well as providers. We also seek input for specific projects. For example, we will be testing educational materials for beneficiaries in the coming months on rights concerning physically accessible care across settings.

Q: What are the major issues affecting people with disabilities?

This is a big question. When we talk about disabilities, we’re talking about physical, behavioral, sensory, cognitive, intellectual and developmental. There is no typical disability, but co-occurring disability is the rule rather than the exception. There’s no question that people living with disability experience more delays and difficulty in accessing needed care, including preventive screening, primary care, and dental visits.

For example, something as fundamental to good quality health care as getting properly weighed at the doctor’s office rarely occurs for people who are unable to stand by themselves. Major issues that are also strongly linked to health are lower employment rates, underemployment, poverty, inadequate health care coverage, injury and violence, smoking, substance abuse, and physical and social segregation from the larger community.

So, it should be no surprise that people living with disability experience higher rates of hypertension, heart disease, diabetes, depression, anxiety, and osteoporosis, and have less opportunity to engage in physical activity. It’s also critical for culturally competent providers to recognize the compounded burdens a person living with a disability experiences if they are a racial, ethnic, sexual or gender minority, have a language barrier, or live in a geographically isolated area.

Q: The CMS Quality Improvement Organization (QIO) Program work touches on issues that affect people with disability through care coordination, physical accessibility in health care settings, etc. How can Quality Innovation Network (QIN)-QIOs help make the connection and improve quality of care for these high risk, high needs beneficiaries?

Whether focusing on multiple chronic conditions, dual eligibles, or hospital readmissions, people with disabilities are disproportionately represented in many QIN-QIO priority areas. People with disabilities often have multiple care providers from clinical to community settings that are disconnected.

A good place for QIN-QIOs to start is to take advantage of CMS and other resources on disability-competent care, address physical barriers, coordinate care, and create a standard process to collect and use information on functional impairments and accommodation needs. All of these strategies will improve the quality of care for people with disabilities and may be incorporated into existing QIN-QIO work.

Q: Tell us about CMS OMH’s recently issued brief on increasing physical accessibility in health care settings.

The issue brief on increasing the physical accessibility of health care facilities is a good example of a product that incorporated extensive input from federal colleagues. The issue brief outlines why physical accessibility is important to people with disabilities, how federal- and state-level efforts are addressing barriers, and recommendations to improve accessibility more broadly. Mechanisms for increasing accessibility include understanding the needs of people with disabilities, sharing information about the physical accessibility of the provider’s facilities, reducing financial barriers for providers to improve accessibility, and increasing provider awareness and training.

Q: You’re also releasing data this month on Medicare beneficiaries with disability by End Stage Renal Disease (ESRD) status. Can you give us a preview?

CMS OMH has developed a data highlight on Medicare beneficiaries who have a disability, with and without ESRD. Using data from CMS’ Chronic Conditions Data Warehouse, this report shows that people who have a disability and also ESRD are more likely to have multiple chronic conditions or be a racial or ethnic minority than those who have a disability but do not have ESRD. The same pattern holds true for 30-day hospital readmissions and the prevalence of peripheral vascular disease and pressure and chronic ulcers.

Q: What other disability resources are you working on that our readers can look for in the near future?

CMS has heard from experts and advocates that many beneficiaries do not know how to request accessible services or might not know that they can make such a request in the first place. At the same time, some health care administrators and providers struggle with translating federal requirements on physically accessible health care into practice.

To address both challenges, CMS OMH is currently developing a beneficiary guide and accompanying checklist to help people with disabilities and their families and caregivers understand their rights around access to care and how to start the conversation with provider staff about accommodation needs; a provider toolkit to present real-life scenarios of common physical accessibility issues in health care and examples of solutions; and a continuing education training module for providers through the Medicare Learning Network on supporting physical accessibility in health care facilities.

Broad stakeholder input is driving what those resources will ultimately look like. 

Q: Which associations and stakeholder organizations does CMS OMH partner with on your disability work?

We partner with both federal and non-federal stakeholders to advance our disability portfolio. Within the Department of Health and Human Services, we coordinate with the Administration for Community Living, Office for Civil Rights, Centers for Disease Control and Prevention, Health Resources and Services Administration, and other components and regional offices across CMS. We also work with the Department of Justice, Department of Labor, U.S. Access Board, and Department of Housing and Urban Development.

Our invaluable non-federal partners include self-advocates, non-profit advocacy organizations, academic researchers, providers, and provider organizations. For example, CMS coordinated with the National Academy of Medicine last year to host a roundtable discussion on health disparities and equity at the intersection of disability, race, and ethnicity. We are constantly expanding our network of governmental and non-governmental experts and advocates.

Q: Anything else you would like our readers to know?

It’s important to understand that achieving health equity is a key component of improving health care quality. Without targeting health disparities specifically in the larger context of improving quality, the result is typically improved quality in general with little, if any, impact on health disparities among historically marginalized populations. CMS is committed to reducing health disparities in partnership with its stakeholders and invites the QIN-QIOs to join us on the path to health equity for our beneficiaries.