Diversity Fellow Project, Patricia Perez

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Models to Promote Consumer Empowerment among Individuals with Disabilities in medicaid Managed Care

Models to Promote Consumer Empowerment among Individuals with Disabilities in medicaid Managed Care [download PowerPoint]

I present a framework of empowerment to guide my dissertation research for the Disability Studies doctorate program at UIC. The topic of my dissertation will focus on Home Community Based Services (HCBS) recipients enrolled in Medicaid and Medicare Managed Care Organizations. There exists little research about the effects of managed care on individuals with disabilities receiving waiver benefits.

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Project Narrative

1. Please describe your activities during your fellowship experience. Describe your final capstone project(s).
During the Fellowship, I was able to complete two critical milestones. I had the great opportunity to participate in the AUCD Disability Seminar in Washington D.C. in April 2018. The seminar worked to expand my understanding about the development of policies and the need for continuous advocacy efforts at any level to maintain and improve established legislation. Also, it was a venue to meet other Fellows and learn about their experience working in different projects and programs with the disability community.

My second accomplishment was the completion of my preliminary examination as part of the doctorate program. One of the topics became the core of my capstone project which was the proposal of a conceptual framework for dissertation research. Based on an extensive literature review, I suggest utilizing the combination of two models of empowerment to promote and evaluate consumer empowerment among individuals with a disability in Medicaid Managed Care environments.

2. Who did your project inform, help, influence or impact? (UCEDD, individual, community, state) How?
This project could inform the beneficiaries enrolled in Medicaid Managed Care health insurance organizations, caregivers, care coordinators, leading members of these organizations and stakeholders involved in the development of policies impacting this population. The proposal would be utilized during my dissertation research. The objective is to inform managed care organizations, policymakers, and leaders how to use care coordination actions better to enhance empowerment levels among the disability community.

3. Why did you choose to work on that project(s)?
This project was selected because I have been working in the field of Medicaid Managed Care for the last five years. I have observed that empowered individuals are those better informed, educated about their rights and benefits which helped them to navigate the complex system of health care in this country. Empowered individuals in health care also impact the good management of their health conditions as well as advocate for the right to remain independent in nonrestrictive environments.

4. What did you gain from being a Diversity Fellow?
As a Fellow, I learned more about the projects and activities other fellows are completing at different settings including universities and communities. Additionally, it contributed to nurturing professional relations with my program cohorts and networking activities with representatives of disability organizations like the Arc of Illinois. Participating in the Disability Policy Seminar increased my understanding of the process to develop and introduce pieces of legislation to support the community. For example, I heard for the first time at the Disability Policy Seminar about the ongoing work to present the Disability Integration Act which supports individuals receiving long-term services and supports. The act will revolutionize the current status quo of long-term care and expand the rights of people with disabilities. Moreover, the completion of my capstone project assists me in increasing my understanding from the literature review of the importance of empowerment interventions on the disability community. I intend to utilize the empowerment framework to guide my dissertation research.

5. How will this experience impact your education or career decisions?
I would like to continue working in the Medicaid Managed Care field. It is my goal to keep working on this topic and finalize my dissertation research. I hope that the findings would work to inform policymakers, leaders of managed care organizations and community organizations intimately connected to the disability community.

6. What are your future goals? Where do you see yourself 5 years from now?
My immediate goal is to finalize the Ph.D. program in Disability Studies. I will continue working on expanding my research skills with a focus on long-term services and supports, Medicaid and Medicare legislation and the impact of managed care organizations on beneficiaries with disabilities. Five years from now, I hope to collaborate with stakeholders including legislators and advocacy organizations in the construction of new and the improvement of policies affecting the disability community in areas related to health care and community integration.

7. What recommendations do you have for other Fellows?My best recommendation is to select a topic for your project capstone that you enjoy which will make a meaningful outcome not only for your professional development but also to the communities that you serve.

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