20Q: Public Policy Advocacy

Dr. Barbara Kornblau, Public Policy Advocate

Public policy has a significant impact on the health of the nation. It affects the number of individuals who are covered by health insurance, how health providers are reimbursed in programs such as Medicaid and Medicare, and how hospitals and research are federally and state funded. Barbara Kornblau is one of the leading occupational therapists in the United States. She has had a distinguished career as a public policy advocate for occupational therapy with unique credentials as a lawyer and as a professor of occupational therapy. Not only is she a past president of the American Occupational Therapy Association, but she was a Robert Johnson health policy fellow to senators Tom Harkin of Iowa and Jay Rockefeller of West Virginia.  She organized stakeholders in a successful effort to include people with disabilities in the Affordable Care Act and its implementing regulations. She founded the Coalition for Disability Health Equity to further this work. As an attorney, she has litigated cases under the Americans with Disabilities Act involving discrimination in employment, state and local government services, and health care services. 

Over the years, I have known Barbara Kornblau from her tenure as president of AOTA, socializing at conferences, and mostly recently working together with her on the new journal Annals of International Occupational Therapy. I am excited for you to get to know her.

Welcome Barbara!

Franklin Stein, PhD, OTR/L, FAOTA
Contributing Editor

Salute to OT Leaders Series

20Q: Public Policy Advocacy: Its Effects on the Profession of Occupational
Therapy

JD, OT/L, FAOTA

History

1. How and why did you choose occupational therapy as a career?

My father was very active in the civil rights movement. From watching his involvement in social justice, I wanted to promote civil rights for people with disabilities. My mother worked in an occupational therapy department of a nursing home. She used to take me to work with her when I didn’t have school – before it was fashionable. I liked helping her, but at the same time, there were things that were happening to these older adults that just didn’t seem fair to me. I wanted them to be able to do more in society.

In addition, I babysat for a young girl with cerebral palsy, and I worked as a volunteer camp counselor at the local camp for children with cerebral palsy. Again, I saw things that just didn’t seem fair. I didn’t think it was fair that these children didn’t go to school or camp with other children. I didn’t like that they were treated as “other”.

When I was applying to college, I decided to apply to schools with occupational therapy programs, so I could learn more about how disabilities affect people’s lives and how occupational therapy could help people acquire the everyday skills they need to improve their functional independence.

2. Who were the mentors who influenced your choice of becoming an occupational therapist?

I was very lucky to have several faculty members who assisted me in my career objectives. One of my faculty-mentors suggested I work in the Wisconsin State Capitol for the Majority Leader of the Assembly. He wrote the first “curb cut” bill in the country. I worked for him during my undergraduate years, I also worked on provider issues with Medicaid reimbursement in Wisconsin and I learned about the role reimbursement played in clinical practice.  I helped in writing a bill that took pejorative terms for people with disability out of the Wisconsin State Statutes. The faculty member also encouraged me to stay in the occupational therapy profession and emphasized to me the important role that public policy plays in promoting independence for people with disabilities. He stressed client independence, or what our profession now calls patient participation. This did not come without advocacy and that occupational therapists needed leadership in this area. His advice to me proved vital to the many roles I have played in my career.

Career

3. Why did you become a lawyer and how does it relate to your career in occupational therapy?

I have always been interested in legal issues affecting people with disabilities. My family members were active in the civil rights movement and I saw many parallels between the civil rights movement and the needs of my patients and clients with disabilities. Working as an occupational therapist, I was frustrated by the limitations imposed by insurance reimbursement and Federal regulations in Medicare and Medicaid that restricted the interventions I could use with my clients and patients.  For example, before cellphones were widely used and the Americans with Disabilities Act was enacted, I was frustrated that I could not teach someone with a mobility limitation to use public communications and a telephone booth. I wanted to acquire advocacy skills so I could make a difference and improve the everyday life of people with disabilities who are served by occupational therapists. In other words, I wanted to enlarge my professional role as a therapist to an advocate for patient rights.

I wanted to go to law school to try and advocate for civil rights for people with disabilities. Being an occupational therapist and an attorney makes me a better lawyer and a better occupational therapist. I can teach my patient/clients how to advocate for themselves, and I can try to negotiate reasonable accommodation in the workplace or community to avoid lawsuits. As an attorney, I specialized in disability advocacy.

4.  Why did you decide to run for President of AOTA?

At the time I ran for President, I felt the occupational therapy profession was in a static position of being reactive to public policy rather than proactive. The Balanced Budget Act had just passed, and overnight, between 7 and 8 thousand occupational therapists got laid off from long term care settings. There was a reduction in the number of students applying for admission to occupational therapy programs, some students were dropping out of occupational therapy educational programs, and a few academic programs were closing. I felt we needed to be more proactive in creating our own future as a profession. I believed we needed to improve the public image of the profession and focus on creating and pursuing pragmatic solutions to respond to the health needs of the nation. I believed we needed to re-energize the profession and to focus more on public health issues and public policy.

Public Policy

6. How did you get involved in public policy issues?

I have always had an interest in making an impact on social justice. When I started at the University of Wisconsin, one of the occupational therapy faculty suggested that I might like to work at the State Capitol for the Majority Leader at the time. I volunteered to work for him and found myself engulfed in policy issues at the age of 17. I investigated Medicaid and its impact in Wisconsin. I learned how much public policy affects the people we serve and how much it affects health care providers. I came to realize just how important public policy is. If legislators change a law, it can change clinical practice.

7. How does public policy affect or influence occupational therapists?

When public policy changes through new laws or governmental regulations, it affects clinical practice. It may affect clinical practice because it can open up new practice areas, such as driver rehabilitation, or restrict coverage for occupational therapy services, such as imposing caps on outpatient services. Examine our history as a profession. Before the Individuals with Disabilities Education Act (IDEA), passed in 1975 and became law, few occupational therapists worked in the public schools. The federal government decided it wanted education for all children with disabilities to be the law of the land and created this policy in the law. As a result of this policy change, occupational therapists are employed in almost all public-school districts, and children with disabilities who need occupational therapy services mostly receive them.

The same thing happened with the Medicare law. As a result of Congress passing Medicare laws in 1965 with new policies amended over the years, occupational therapy practitioners began to extend occupational therapy services in rehabilitation hospitals, long term care facilities, and home health. Medicare is a federally funded healthcare program that primarily covers people over the age of 65.

8. Why should occupational therapists care about public policy?

Occupational therapists need to be concerned about public policy because changes in public policy can expand or reduce reimbursement within traditional practice areas, or it can eliminate reimbursement, narrow clinical practice, and cause occupational therapy practitioners to lose jobs.

From a social justice perspective, occupational therapists should care about public policy because public policy can improve the lives of the people we serve. Imagine the difference we would see if Medicare were to pay for grab bars and raised toilet seats? Imagine if children who graduate from the school system were allowed to keep their communication devices and other adaptive equipment that the school system originally paid for? These are the kind of positive changes that could happen in the future with changes in public policy.

On the other hand, the people we serve might find themselves facing cuts to coverage such as limits on the number of occupational therapy sessions as a result of changes in public policy.  This is another reason occupational therapists should be aware of and advocate for public policy issues improving occupational therapy and health care services in general.

9. How can occupational therapists get involved public policy?

Occupational therapists can get involved in public policy in several ways. First, you can familiarize themselves with positions on healthcare that their elected officials advocate. You can learn about their positions on healthcare and try to influence and educate them on occupational therapy. You can connect with the legislators by determining:  What you have in common with them? Are you from the same hometown? Did you attend the same college? Do you have children the same age? Does the elected official have a child with a disability or a family member who has had a stroke? What connection do you have that can help you to share your occupational therapy story with them? Another way is to work with your state occupational therapy association in lobbying for occupational therapy. AOTA also has a lobbyist who advocates for the profession and keeps abreast of issues affecting clinical practice.

10. What can the occupational therapy profession do to have more influence on public policy?

Occupational therapy practitioners can work on political campaigns to get to know policy makers. They can attend town hall meetings with other occupational therapy practitioners, patients/clients, or parents and inform their policy makers on how occupational therapy is an effective healthcare profession that can change people’s lives through meaningful and purposeful occupation.

11. What is a Robert Wood Johnson Health Policy Fellow?

The Robert Wood Johnson Foundation explains on its website that it “funds a wide array of programs which are working to help build a national Culture of Health.” One of the programs it funds is the Robert Wood Johnson Health Policy Fellowship. Fellows come to Washington D.C. and spend 3 months in what is referred to as “health policy boot camp.” Fellows visit all of the federal agencies that have anything to do with health care to learn what they do. Lectures are given on how Congress works. After the training, the Fellow works for 9 months to a year in the House, the Senate, or for a federal agency. I learned about the mechanisms involved in public policy, and I highly recommend interested occupational therapists to apply for a Robert Wood Johnson Fellowship.

12. Describe your position working in the US Senate as an occupational therapist.

I worked for 2 Senators. First, I worked for Senator Harkin from Iowa, the main sponsor of the Americans with Disabilities Act and other disability-related legislation. I did policy research into possible bills to improve the Americans with Disability Act (ADA), before the ADA Restoration Act. I met with constituents and stakeholders about a variety of health and disability issues. I also worked for Senator Rockefeller from West Virginia, with the Senate Finance Committee, where I worked on the reauthorization of (CHIP), the Children’s Health Insurance Plan and Medicaid and ideas for Federally Qualified Health Centers, that would later become part of the Affordable Care Act. I wrote policy recommendation in a variety of areas and helped to draft bills. 

13. How does the Affordable Care Act directly affect the practice of occupational therapy?

The Affordable Care Act (ACA) was created with the intention to enable all Americans to have quality affordable healthcare. The ACA affects occupational therapy practice in several ways. First, it increases the number of people covered by health insurance. More covered people means more potential patients/clients are available to receive occupational therapy services. ACA also eliminated annual and lifetime caps on health insurance spending. This opens up more potential patients/clients as well, since people with chronic and/or catastrophic conditions no longer need to forgo life savings to afford rehabilitation services in favor of saving insurance funds for life saving treatment.

Another benefit in ACA is coverage for habilitation in addition to rehabilitation. Before the ADA, most policies covered some rehabilitation, though occupational therapy might have been excluded or limited.  ACA included occupational therapy as an essential health benefit and so it is covered in most plans.  Coverage for habilitation means that children born with disabling conditions, such as autism, Down syndrome, or cerebral palsy, are eligible for occupational therapy intervention. This opens up new practice areas for occupational therapy.

14. What are the implications for occupational therapy if the ACA is repealed?

If ACA is repealed, coverage for occupational therapy will return to the pre-ACA level. This means that habilitation and rehabilitation will no longer be covered as essential health benefits, removing coverage for occupational therapy services for children born with medical conditions or disabilities and others who need rehabilitation at the discretion of health plans, insurers, and employers. The annual and lifetime caps on insurance coverage would likely return as well. Medicaid expansion would disappear, taking with it the larger pool of potential occupational therapy clients. The number of uninsured individuals would likely increase back to pre-ACA levels, decreasing the number of people with insurance coverage to pay for occupational therapy.  Imagine having to discharge patients and clients who still need therapy, but no longer have any coverage. The decrease in the number of patients would likely lead to job losses for occupational therapy personnel.

15. What is the Americans for Disabilities Act (ADA) and its implications especially in community participation, and ergonomics, and occupational therapy?

The American with Disabilities Act is truly a civil rights act for people with disabilities. Before the ADA, people with disabilities were not guaranteed a right to have access to participate in the community. Steps at the entryway to buildings where the public goes to participate in their occupations in the community might as well have been a sign that read “Able-Bodied People Only.” The ADA tried to end the physical barriers that kept people with disabilities out of the mainstream of participation in occupations in the community. This is important for occupational therapy, considering that we measure health by participation and work to promote participation in occupations including community participation. So, in theory, the ADA has helped the occupational therapy profession by “opening up’ the community to people with disabilities, so they can participate like everyone else. Now, occupational therapy practitioners can work on client-centered goals that reach into the community and physical barriers should no longer prevent community participation.

However, several issues that come to mind when I think of the ADA and occupational therapy. First, the ADA is under attack. H.R. 620, the ADA Education and Reform Act passed the House in early 2018 and is headed to the Senate. This bill would require people with disabilities who find businesses that do not comply with the ADA, “to jump through a series of hoops” before they can sue a business for non-compliance with the ADA regulations. This is despite the fact that businesses have had nearly 30 years to comply with the ADA. The changes to the ADA in HR 620 would require notice of a violation and a cooling off period, among other things, despite years of notice of the changes required by the ADA since it became law 30 years ago. 

The second thing that comes to mind are the opportunities the ADA gives to occupational therapy professionals to provide consultation to problems to solve ways for business and other places of public accommodations to provide access to the goods and services they provide and other ways to comply with the ADA. ADA compliance is win/win because providing access increases business to business and community participation for the people we serve as a profession. This requires looking at occupational therapy as creating access and opportunities for individuals with disabilities. For example, I work as a consultant with the American Association of Health and Disabilities (AAHD) on a grant from the Susan G. Komen Foundation. I consult with a FDA certified mammography facility in the community and conduct an accessibility audit. I make recommendations on how to make the facilities more accessible to women with disabilities.

The ADA brings a third thing to mind for occupational therapy. In theory, the ADA opens up more job opportunities for people with disabilities, because of the requirement for employers to make reasonable accommodations to enable people to do the essential functions of their jobs. This presents opportunities for occupational therapists to do consultations with patient/clients as well as employers to work together to problem-solve on different ways to perform jobs and the accommodations that might be needed. These ergonomic or simple changes may be obvious to occupational therapists, but not so obvious to others. For example, perhaps the worker can place items normally carried on a cart. In my experience, I have found that occupational therapists often come up with the $10 answer, while other experts see a $10,000 answer.

16. Why is public policy important at the state level?

Public policy is formed at the state level as well as the federal level. For example, the decision to participate in Medicaid expansion or not was a decision made at the state level. The amount of reimbursement for occupational therapy under Medicaid and who is covered under Medicaid is also a state level decision.

The decision to cover occupational therapy under the state employee’s health plan is a state level issue. Licensure and the parameters of the occupational therapy licensure law is a state issue, including the requirements for continuing education and supervision of certified occupational therapy assistants.

For example, whether applied behavior analysis (ABA) is covered by insurance is a state policy issue. Parents in states that do cover ABA fought hard to lobby state legislators to pass laws that require insurers to cover ABA services in their states.

In the states that expanded Medicaid, the pool of people eligible for occupational therapy coverage has also expanded. Expanding pools mean that more people can be referred to occupational therapy for needed services. In the case of Medicaid expansion, for many, we are talking about the working poor, who may be working with chronic conditions for which they had no insurance. Now with insurance, occupational therapy can help them make their lives easier and changes to the way they do things that enable participation and better function. Occupational therapy strategies for pain management for this population also present a big opportunity for practice.

17. How does the funding for Medicaid directly affect occupational therapists?

Medicaid is a federal program administered by the states and was enacted to help individuals who have incomes below the poverty line. States must provide certain basic services and can add other services to the list or required services if they chose to. States receive matching funds from the federal government to provide the required services. There are hot two issues that right now in Washington, D.C. that can directly affect occupational therapy practice. First, among the required services states must provide under Medicaid are services for children. Many states use their Medicaid funds to pay for health care services provided in the public school. These health care services include occupational therapy.

Since the Tax Reform Bill passed in December 2017, there have been discussions in Congress about the need to cut Medicaid or as it is euphemistically called “entitlement reform.” There are several ways to do this. There has been talk about “block grants,” where states would receive a pre-set amount of Medicaid dollars, or “per capita caps,” where federal funding would be capped per enrollee.1 States currently receive money to cover the services they provide, based on a formula. However, either plan, block grants or per capita cap, would cut large amounts of Medicaid funding to states who currently receive funding. Those cuts translate into cuts to school funding for occupational therapy services.

Some say not to worry because if occupational therapy is written in the Individual Education Plan (IEP), the schools have to provide the services and occupational therapy practitioners are safe. If funding is eliminated or services are reduced, occupational therapy practitioners will find themselves without school-based employment. Perhaps children will be seen in groups for occupational therapy. Perhaps IEPs will get re-written, leaving most parents to accept fewer services because they can’t afford to hire attorneys to fight for more services and/or they don’t understand the process to advocate for more funding and services.

Second, in some states that expanded Medicaid, we are seeing Health and Human Services approving new Medicaid waivers with work requirements for Medicaid beneficiaries. Experts from the University of California-San Francisco warn that many Medicaid beneficiaries will be at risk of losing much needed health coverage if states implement the work requirements. If Medicaid beneficiaries lose health coverage, they lose access to occupational therapy services (depending on the state’s coverage for occupational therapy).  When people lose access to occupational therapy services, occupational therapy practitioners lose jobs.

Finally, in States that chose not to expand Medicaid, we have been seeing closures of rural hospitals. When hospitals close, occupational therapy practitioners lose jobs and people lose needed occupational therapy service.

18. How do the courts play a role in public policy that affects occupational therapy?

Judges, through court decisions, can create policy as “judge-made” or common law. For example, in the recent case of Jimmo v. Sebelius, No. 5:11-cv-17, 2011 WL 5104355 (D. Vt. Oct. 25, 2011), a judge’s decision to accept a settlement agreement changed Medicare policy by throwing out Medicare’s “improvement standard” for people with chronic conditions.2 Many occupational therapy practitioners will remember the warnings to immediately discharge Medicare patients who “plateau” or are no longer making progress. Because of this court ruling, occupational therapists do not have to discharge patients merely because they plateau, provided the patients still require skilled care and the therapist documents the need for skilled care.

19. How do public health policies affect or influence occupational therapy?

Healthy People 2020, the federal government strategic plan for public health in America, speaks of the “social determinants of health,"3 while the philosophical basis of occupational therapy tell us “participation in meaningful occupations is a determinant of health.”4 These are significant measures of the public’s health. The social determinants of health “are conditions in the environments in which people are born, live, learn, work, play, worship, and age that affect a wide range of health, functioning, and quality-of-life outcomes and risks."5 “Conditions (e.g., social, economic, and physical) in these various environments and settings (e.g., school, church, workplace, and neighborhood) have been referred to as “place.”5 Looking at how people experience “place,” is tantamount to occupational therapy’s focus on the environment, including the environment in which people live.  Healthy People 2020 reminds us that “understanding the relationship between how population groups experience 'place' and the impact of 'place' on health is fundamental to the social determinants of health—including both social and physical determinants. These are fundamental concepts for occupational therapy.”5

Occupational therapy has the power to have an influence on social determinants of health and make a difference in people’s lives. When we do home assessments, we can look at “place” in terms of availability of grocery stores, and transportation. If our client/patient has no access to transportation, should we be teaching them to use Uber or other alternatives? If the only food available to them is processed “fast food” at the local package store, should we help them find delivery services or help them organize a food co-op or organize neighbors to encourage a grocery store that sells fresh fruits and veggies to come into the neighborhood?

There are many aspects of occupational therapy that reach into population health or public health. For example, the older driver initiative looks to address a population issue. Occupational therapists who work with the homeless or people living with chronic pain are also addressing population issues. There are many other areas where occupational therapy can address population health issues, especially issues with participation.

Future Thoughts

20. What is the future of public policy on the expansion of occupational therapy beyond one-to one patient services or intervention?

Looking to the future, we are at a crossroads in several areas where population based programs will be needed to meet society’s needs. Occupational therapists, based on their expertise, can help create those programs. The two that quickly come to mind are the aging baby boomers and children with developmental disabilities transitioning to adulthood.

There are not enough beds in nursing homes to accommodate the aging baby boomers, and most baby boomers do not see themselves as future nursing home residents. They are going to want to stay in their homes and in their communities as long as possible. We are going to need new models to meet these needs. Older adults will need to care for themselves and each other. They need to be safe in their homes. They need to have safe access to food and meals. We are seeing new services springing up, like HelloFresh and Blue Apron, that can help meet some of these needs, and creative occupational therapists can develop other programs to meet the anticipated population-based needs of the community-dwelling baby boomer elders. “SafeAtHome” – my made-up suggestion – can be a new service that older adults can pay for themselves to decrease falls and promote safe community-based independent living in the community. Alternatively, instead of giving elders another holiday gift they don’t need, get them a “SafeAtHome” visit. These kinds of programs and interventions are only limited by the creativity of our colleagues, as so much is needed to meet these future population-level needs.

Pediatric occupational therapists have been inundated with autistic children (Note: I do not use people first language with autistic people because they prefer identity language) in clinics and school-based practice for more than 15 years. These children grow up to be adults. As adults, they are having difficulty obtaining and maintaining employment. They have problems socializing with peers. This is a population-level problem that needs creative programmatic solutions. Occupational therapist can develop and lead these programs as innovators.

Imagine occupational therapists working with large tech companies that want to hire autistic adults. Occupational therapists can provide input on environmental design to eliminate bright lights, highly reflective walls, and unnecessary noises in the workplace that can cause sensory nightmares for autistic adults, as well as the children they may have treated. Occupational therapists can provide assistance to autistic adults to learn how to answer interview questions, what to wear in the workplace, and how to make interviewers feel comfortable with an autistic interviewee. Qualitative studies we have done at Florida A&M University with autistic adults in partnership with an autistic adults researcher shows that attitudes of others in the workplace often lead to unsuccessful work experiences. Occupational therapists can work with non-autistic adults in the workplace to raise their sensitivity levels to working with autistic adults. Occupational therapists can develop these programs similar to mandatory sexual harassment training in the workplace to help support autistic adults integrationing into the workplace. Again, these programs are only limited by the level of creativity of our occupational therapy colleagues.

Summary

In summary, public policy has a direct influence on the practice of occupational therapy in many ways.

References

[1] Rudowitz, R. (2017). 5 key questions: Medicaid block grants & per capita caps. Retrieved from https://www.kff.org/medicaid/issue-brief/5-key-questions-medicaid-block-grants-per-capita-caps/

[2]  Kaye, H.S. (2018. February 15). How do disability and poor health impact proposed Medicaid work requirements? (Report) Retrieved from http://clpc.ucsf.edu/publications/how-do-disability-and-poor-health-impact-proposed-medicaid-work-requirements

[3] Office of Disease Prevention and Health Promotion, Health and Human Services. (n.d.). Social determinants of health. Retrieved from https://www.healthypeople.gov/2020/topics-objectives/topic/social-determinants-of-health

[4] American Occupational Therapy Association. (2017). Philosophical base of occupational therapy. American Journal of Occupational Therapy. 7/(Suppl. 2), 7112410045. https://doi.org/10.5014/ajot.2017.716S06

[5] Office of Disease Prevention and Health Promotion, Health and Human Services. (n.d.). Social determinants of health. Retrieved from https://www.healthypeople.gov/2020/topics-objectives/topic/social-determinants-of-health