G-2203-17362

The Arc of Greater Pittsburgh/ACHIEVA is a Pennsylvania-based organization that advocates for, empowers, and supports people with disabilities and their families over the course of their lifespan. They provide direct services in the form of early intervention, housing support, financial education, employment support and family support, and they also have a strong advocacy arm that engages disability self-advocates on issues of healthcare, inclusive education, and criminal justice.

In 2021, ACHIEVA identified the Governor’s Exception Medically Underserved Population (EMUP) designation as a mechanism for increasing access to healthcare, including oral healthcare, for the disability population in Pennsylvania. The work over the past year involved coalition-building for this effort with both national and state-based partners, collection and compilation of data illustrating oral health “underservice” of Pennsylvania (PA) residents with disabilities, and preliminary education to legislators about the EMUP designation. With high staff turnover in the PA Bureau of Health, ACHIEVA faced some challenges with state-based deliverables, and pivoted some of their resources to advocate for Congressional action around HR 6075: HEADs UP Act of 2021, which would designate people with developmental disabilities as a Medically Underserved Population (MUP) nation-wide and mandate comprehensive oral healthcare to be integrated as primary care for this population. The MUP designation would also open doors to incentive payments for providers through Medicaid and Medicare.

In 2022, ACHIEVA will capitalize on the momentum that has been generated to advance these two advocacy initiatives, and third, to amplify disability voice in healthcare through several different tactics. In PA, ACHIEVA will provide education to Health and Human Services officials, PA’s Office of Health Equity, Medical Assistance Programs staff, and the Governor’s Office about the benefits of a Governor’s Exception MUP designation for the disability community. ACHIEVA will also work within its network of disability self-advocates, health care organizations, and disability organizations to garner support, and collect stories illustrating the need for this designation. ACHIEVA will work with state offices to advocate for better data around health equity as it relates to the disability community, which will serve as further evidence of the need for a MUP designation.

Nationally, ACHIEVA will mobilize advocates for HR 6075 by meeting with members of the Energy and Commerce Committee and Appropriations Committee and their respective staff, in coalition with other disability partners such as Arc of the United States, Harvard Disability Law Project, and Special Olympics. This group will compile a comprehensive education and advocacy packet that will be distributed to committee members.

In support of this work, ACHIEVA will continue to build connections on a state scale with health organizations and disability organizations to expand available health disparity data and stories from self-advocates and their families.

The total budget for this proposal is $144,442. Approximately $120,000 of the budget is allocated toward staff time. About $8,000 of the budget will cover administrative expenses, and the remaining $10,000 will be distributed in mini-grants to partners involved in the Medically Underserved Population work. This request represents 11% of the organization’s overall budget.