Disability Healthcare Initiative

ACHIEVA Disability Healthcare Initiative (DHI) is providing statewide leadership on improving access to health care for disabilities through education, public policy and advocacy. The organization works to increase physical and programmatic access, medical workforce development and education. ACHIEVA works with many stakeholders, including individuals with disabilities and their families, medical professionals, hospital and health centers, government agencies, educators, insurance companies, foundations and disability advocates to develop viable solutions to increase access to physical health care and dental care for people with disabilities. 

Since its creation in 2005, ACHIEVA’s DHI has increased access to dental care, improved women’s health care and is now focusing on health care transitions for youth with disabilities and chronic medical issues as they move to adult care systems.  “The DHI recognizes that transition is not merely a matter of making lists of providers for families, but also acknowledges the training gaps and limited numbers of providers who are able to provide care to those with developmental disabilities,” says Miya Asato, M.D., associate professor of pediatrics and psychiatry, Division of Child Neurology, Children’s Hospital of Pittsburgh of UPMC.  “This initiative is powered by dedication, and its strong leadership sets a national care standard. Importantly, the DHI addresses a health care need in our community for an underserved population with many health problems.”

In 2005, with the support of the FISA Foundation, ACHIEVA created the Disabilities Health Policy Forum, now called the Disability Healthcare Initiative (DHI), and began its work on access to healthcare for children and adults with disabilities. Access to dental care was the first issue undertaken by the DHI.

With the support of the Pennsylvania Developmental Disabilities Council and the FISA Foundation, in 2007, ACHIEVA created the Advancing Oral Healthcare Project to identify barriers to accessing dental care for people with intellectual and developmental disabilities (I/DD) and to promote strategies and initiatives for systemic change, ensuring access to affordable, equitable services. Several of these initial efforts are now being realized.

With the continued support of the FISA Foundation, in 2007, the Disability Healthcare Initiative published Access to Oral Health Care for Pennsylvanians with Disabilities: A Rising Public Health Issue which identified the issues that contributed to oral health care for people with disabilities being a serious public health problem. As a result, the issue of disparities in access to dental care for people with disabilities received the attention of dental professionals, insurers and Pennsylvania legislators.

In 2009, DHI produced Access to Dental Care for People with Disabilities: Challenges and Solutions – A Report to Pennsylvania’s Legislators .  In this report, DHI made seven recommendations to improve access to oral health care for those with disabilities. Several of these recommendations have come to fruition.  For example, private insurance companies must now provide dental insurance payment for anesthesia for children under age five and people with disabilities.   In 2014, one more recommendation reached completion.  Senate Resolution 2013-61 directed the Legislative Budget and Finance Committee, a Joint Committee of the Pennsylvania General Assembly, to study and issue a report on the disparities found in dental care for Pennsylvanians with disabilities, both children and adults, and to make recommendations to preserve and improve such services.  Electronic questionnaires were sent to all 8,100 dentists in Pennsylvania with active licenses; with an 8.5 percent rate of return 684 dentists responded. The finished report, Dental Services for People with Disabilities in Pennsylvania, was presented to the PA Legislature on February 24, 2015.

Dental Services for People with Disabilities in Pennsylvania cites some issues that specifically impact people with disabilities. For example, one issue cited in this report is that Pennsylvania does fund dental services for adults through Medicaid, but the Pennsylvania Department of Human Services significantly scaled back the level of benefits in 2011. These scaled-back benefits do not apply to persons in nursing facilities or ICF/MRs, but do apply to other Medicaid-eligible Pennsylvanians with disabilities. For example, root canals and crowns are no longer covered for adults covered by Medicaid.  In addition, there are benefit limit exception procedures but providers note they are too cumbersome and difficult to obtain.  A second issue is the low Medicaid reimbursement rates that cause many dentists do not participate in the Medicaid program which leads to more difficulty for adults with disabilities to access services.   A third issue is that comprehensive Medicaid dental benefits are not available in Pennsylvania, 30 of 67 Pennsylvania counties had no dentists willing or able to accept a special need patient, but that 70% of dentists indicated that they would be willing to treat patients with special needs.  DHI is continuing to work on all of these issues.

In 2012, the Disability Healthcare Initiative continued nationally recognized work of the FISA Foundation on increasing access to health care for women with disabilities and wrote Access to Healthcare for Women and Girls with Disabilities: A Report to Pennsylvania Legislators. This report also developed seven recommendations including instituting a part-time loan forgiveness program, using existing funding, for medical and dental professionals. HB 2179 was introduced in May 2014 to establish this program.

Also in 2012, ACHIEVA was selected by The Arc of the United States to be one of five pilot sites in the nation to implement HealthMeetTM, funded through a cooperative agreement with the Centers for Disease Control. According to The Centers for Disease Control and Prevention (CDC), adults with any disability experience three times the risk of heart disease, diabetes, stroke, and cancer as compared to the general population. The term ‘health disparity’ is used to describe such differences in the health status between different groups of people.
HealthMeetTM offered free health screenings to adults with disabilities while promoting health and wellness through webinars and information for people with disabilities, families and health professionals. This project is part of national efforts to collect and analyze data regarding health issues, to promote information around health disparities and to improve access to healthcare for people I/DD and disabilities.

On July 25, 2013 we delivered the “Because Every Goddess Deserves Good Healthcare” booklet, with the support of the Women and Girls Foundation, to all members of the General Assembly thanking them for their support of legislative efforts on behalf of those with disabilities, especially for women who often have trouble accessing services for routine care.

In 2014 the Disability Healthcare Initiative expanded its focus to include the transition of young adults with disabilities and chronic/special health care issues from pediatric to adult health care.  We researched and produced the report, “Transition from Pediatrics to Adult Medical Systems for Young Adults with Disabilities or Special Health Care Needs”. Printed in April 2014, this report was sent to the Pennsylvania Secretaries of Health, Education and Public Welfare. It was also emailed to all Pennsylvania’s Medicaid Managed Care Organizations – to the President, the Medical Director and the Communications liaison. In addition, it was distributed through the Elks Home Service Nurse program across the Commonwealth and to other stakeholder groups throughout Pennsylvania.

ACHIEVA’s Disability Healthcare Initiative (DHI) also received the 2014 Benjamin Rush Community Organization Award from the Allegheny County Medical Society (ACMS) on Saturday, March 7 at the ACMS Foundation Gala. Established in 1947, the award recognizes a company, institution, organization or agency that is successfully addressing a community health issue.

All of this work positioned ACHIEVA to become a partner organization with the national DentaQuest Foundation, the leading U.S. philanthropic entity focused solely on oral health for vulnerable populations. DentaQuest grants have allowed us to join other statewide and national partners to increase the perception of the value of oral health and work towards a comprehensive adult Medicaid dental benefit in Pennsylvania.

During the first year, 2015-2016, we convened a 30-plus member stakeholder group in southwestern Pennsylvania that included oral health advocates, marketplace insurance providers, community support centers, consumer advocates, safety net providers, child education networks, professional membership organizations, health literacy entities, our dental school and health department and rural health partners.  

ACHIEVA’s stakeholder group was an integral part of helping us develop a landscape assessment survey and collect survey responses from 1,013 people in food banks, family centers (including a large refugee center), childhood education programs, health clinics, mobile medical units visiting personal care homes, housing programs for those leaving incarceration, mental health programs, faith groups, and low income adults new to health coverage through the ACA marketplace.  We learned that the awareness of the value of oral health is a huge barrier. People did not seem to understand what is good oral health or why it is important to overall health.

During the second year, we focused on eradicating dental disease in children under age 5, increasing the public perception of the value of oral health, developing consumer advocates and leaders to improve the public perception of the value of oral health among those with Medicaid coverage. During the third year, we are focusing on enhancing the adult Medicaid dental benefit and streamlining the benefit limit exemption process which is negatively impacting the ability of people to access Medicaid dental benefits.

During 2016 and 2017, with the support of the FISA Foundation, ACHIEVA’s Disability Healthcare Initiative has researched and explored enhancements for the University of Pittsburgh School of Medicine’s curriculum on disability to ensure that disability medicine becomes a component of the required four-year curriculum for all medical students.  DHI believes that it is imperative that medical students receive high quality didactic and clinical education and training in caring for patients with disabilities and special health care needs in order to increase access to quality healthcare for this population.

For information about ACHIEVA’s Disability Healthcare Initiative, please contact Vanessa Rastovic, Esq., at 412.995.5000 x569 or vrastovic@achieva.info.

DHI Reports