Oral Health Barriers

The Disability Healthcare Initiative at ACHIEVA/The Arc of Greater Pittsburgh was recently awarded a two-part grant from the national DentaQuest Foundation to improve access to oral health care across the southwestern region of Pennsylvania. This initial grant funding will support community-level collaboration to assess the oral health awareness landscape and determine barriers to care in vulnerable populations. As part of this work, ACHIEVA created to electronic surveys to gather data about the oral health of southwest PA, one for the parents of young children and one for adults.

Based on the information gathered through this survey process, ACHIEVA will lead a group of community partners to create an action plan to address oral health barriers and work towards implementation to reduce those barriers. ACHIEVA’s goal is to create partnerships to build better awareness about the value of oral health and integrating oral health into overall well-being for everyone, but especially those that often have barriers to care. These local efforts will connect with state level work to reduce cavities in children and make oral health care education a priority in schools, alongside medical practices and with families across the community.

As part of this work, the Disability Healthcare Initiative at ACHIEVA will also hold a seat on DentaQuest’s national oral health connection team to share insight about the oral health of persons with disabilities and ACHIEVA’s work around increasing access to dental care for those with Medicaid insurance coverage.

The DentaQuest Foundation is the leading U.S. philanthropic entity focused solely on oral health. The DQF is supporting the development of the Oral Health 2020 network across the nation, a group of partners committed to working collectively at the national, state and community levels to eradicate dental disease in children and improve lifelong oral health.


Youth who have significant medical, intellectual, communications and/or behavioral challenges, can face challenging barriers as they transition from the pediatric health care system to adult medical providers. This transition period coincides with the same time frame where families are struggling with additional challenges such as how decisions will be made, where young adult children will live, how they will manage their medical support and what their daily lives will look like, even for those children without disabilities. We know that a national “emerging young adult” health agenda– including thoughtful healthcare research, programs and national and state policies regarding delivery and access to healthcare must be developed (Emerging Young Adults by Lawrence S. Neinstein, 2013)  for this youth at risk and that includes those with special healthcare needs and disabilities.

According to Neinstein’s report there are 34. 6 million emerging young adults in the United States which is defined as young people aged 18 to 25. They occupy the space between adolescence and young adulthood– they are separating from home and parents, but in many instances are not yet completely independent adults. It is a potentially precarious time of life. If they also are living with a disability or chronic medical issue, life can be even more complicated.

Nationally about 32.5 million people of all ages in the United States live with severe disabilities which is about 12 percent of the population. Approximately one to two percent of all school-aged youth nationally have complex support needs. We know this population faces challenges in healthcare transition. In 2013, we will explore these challenges and develop recommended solutions to address the challenges.

Transition from Pediatrics to Adult Medical System for Young Adults with Disabilities or Special Healthcare Needs


The Arc of the United States recently launched its new HealthMeet™  project, funded through a three year, 1 million dollar cooperative agreement with the Centers for Disease Control (CDC). Through this project, five chapters of The Arc, including ACHIEVA, will have the opportunity to pilot local health screenings and to promote health and wellness activities for people with intellectual and developmental disabilities (I/DD), including webinars.

“With cutting edge technology and a network of top notch partners, this project has the potential to uncover eye-opening information about the health of the millions of people with I/DD in this country. We are thrilled to be given this opportunity by the CDC to learn more about the health of this population and help change lives in the long run by informing policy and systems change at a national level,” said Peter V. Berns, CEO of The Arc.

Each pilot site will work to improve the health of people with I/DD through health screenings and trainings for people for I/DD, their caregivers and heath professionals. These sites will play a critical role in national efforts to collect and analyze data regarding health outcomes and issues for people with I/DD, to promote information regarding health disparities for people with I/DD and to improve health care access for all people with I/DD.

The pilot sites are:

  • ACHIEVA – Pittsburgh PA
  • The Arc of Massachusetts – Waltham MA
  • The Arc of New Jersey – North Brunswick NJ
  • The Arc of North Carolina – Raleigh NC
  • The Arc San Francisco – San Francisco CA

To find out more about HealthMeet’s services and why it’s needed, please visit

Access to Oral Healthcare for Pennsylvanians with Disabilities: A Rising Public-Health Issue

In Pennsylvania, as in other states, access to oral health care for people with developmental disabilities (among other Medicaid-eligible populations) has become a serious and persistent public-health problem. Although the link between oral health and overall good health is increasingly well understood and documented by the health professions, oral health is often strikingly absent from discussions of public health and health care.

The awkward fit between the dental profession’s predominant business model and today’s public-health infrastructure is creating a troubling trend toward a double standard of oral health care in America. If current trends continue, access issues in Pennsylvania for people with developmental disabilities will worsen. Should that happen, poor oral health will ultimately take an even greater toll on the overall health of hundreds of thousands of Pennsylvanians, with commensurately higher – and often preventable – costs to the Commonwealth’s Medicaid system.

The Unmet Needs
Difficulties accessing oral care are faced by people with developmental disabilities across the country.

  • Dental care represents the number one health care issue among people with neurodevelopmental disorders
  • Dental care is the number one unmet health care need for children with special health care needs
  • Compared to the United States population, people with developmental disabilities have significantly higher rates of poor oral hygiene
  • Research increasingly links chronic oral infections to systemic conditions (e.g. diabetes, cardiovascular disease and strokes). This means that people with developmental disabilities are at a higher risk for serious health problems that lead to even higher costs in loss of function, human suffering and health-care expense.

National Trends
People with developmental disabilities may represent the proverbial “canary in the coal mine.” A review of their problems accessing care raises questions about the dental community’s future capacity to serve all Americans.

  1. The United States is not training as many dentists per year as it did 20 years ago, due in part to falling federal and state investments in dental schools and increasingly non-competitive compensation for dentists on faculty.
  2. Nationally, 35 percent of the nation’s dentists are over age 55. Over one-third of the existing workforce is poised to cut back on practice hours or retire outright in the next decade.
  3. The ratio of dentists to total population is projected to keep declining through 2020; in 15 years there will be 10 percent fewer dentists per 100,000 Americans than there were in 1994.
  4. The clustering of dental professionals in urban areas creates additional disparities in access to care. More than 40 million Americans live in federally designated health professional shortage areas – many of them in rural parts of the country.
  5. Federal funded community health centers are obligated to offer dental care to low-income groups; however, there “safety-net” providers encounter the same severe challenges as dental schools in recruiting and retaining dentists, especially in rural areas.

Access to Oral Health Care for Pennsylvanians with Disabilities: A Rising Public-Health Issue

Access to Dental Care for People with Disabilities: Challenges and Solutions

The Problems
There is a fast growing body of evidence which links poor oral health with increased risks for systemic conditions such as heart disease, diabetes and aspiration associated with chronic obstructive pulmonary disorder (COPD).  Furthermore, people with disabilities are at a greater risk for health issues related to the lack of dental care.

In Pennsylvania:

  • 75 percent of dentists do not accept Medicaid
  • There are approximately 2,000 dentists available to treat approximately 2 million people on Medicaid (1,000 patients to 1 dentist)
  • Dentists cite low reimbursement rates and lack of training as to why they can’t treat people with disabilities
  • 43 percent of the dentists in Pennsylvania are between the ages of 50 and 64
  • 57 percent of pediatric dentists, those who traditionally have treated people with disabilities, are age 50 and older
  • 75 percent of people with disabilities can be treated in a typical dentist office
  • Practices that provide intravenous (IV) sedation and other specialized care are difficult to find

We recommend directing the Legislative Budget and Finance Committee to study and issue a report on the disparities in dental care for Pennsylvanians with disabilities. Issues that would be helpful to review can be found under Policy Recommendations in the full report (below).

  1. Preserve what we already have. Maintain Pennsylvania’s commitment to Medicaid funding for dental services for adults. Proper dental care saves money, while dental problems result in costly medical care.
  2. Provide more incentives in the Medicaid rates for dental services provided to people with disabilities. This would be an incentive for dentists to treat people with disabilities.
  3. Institute a more flexible dental loan repayment program using existing funds to treat people with disabilities, especially in Pennsylvania’s underserved areas.
  4. Ensure that private insurance companies are mandated to provide dental insurance payment for anesthesia for children under the age of five and people with disabilities who need it.
  5. Support workforce initiatives that expand the duties for dental assistance. This will allow dentists to provide more services to all patients.
  6. Ensure that flouride is added to our public drinking water.

Access to Dental Care for People With Disabilities: Challenges and Solutions– A Report to Pennsylvania’s Legislators 

Access to Healthcare for Women and Girls with Disabilities

The Problems
Women and girls with disabilities have difficulty getting basic medical care. 20 years ago, after the Americans with Disabilities Act (ADA), many medical provider offices are still not accessible for women with mobility, communication and sensory disabilities. When access to healthcare is denied, not only are people at risk or serious health consequences, but hospitals and medical providers are at risk for exposure to federal lawsuits.

Pennsylvania’s women with disabilities are likely:

  • Unable to be weighed routinely for medications (mobility)
  • Unable to identify what prescriptions they are taking – need Braille or audible prescriptions bottles  (vision)  The Equal Rights Center (2011), Ill-Prepared: Health Care’s Barriers for People with Disabilities, “Audible bottles” are prescription bottles
    that have a devise affixed to them that provides information regarding the medication audibly [by sound/speaking] to assist individuals with
  • Unable to provide an interpreter or captioner in a private health care conversation (hearing)
  • Unable to know what forms they are signing (vision; intellectual disability)
  • Unable to access all medical providers buildings, treatment rooms, exam tables and diagnostic testing equipment (mobility)
  • Unable to find a provider with the education and experience to treat them all

When women with disabilities are able to access routine healthcare, they have fewer hospitalizations and fewer emergency room visits, reducing overall costs for both public and private payers.

  1. Enact legislation to educate and monitor and enforce accessibility requirements through the Americans with Disabilities act (ADA) for all medical providers.
  2. Integrate ADA requirements into the Department of Health licensing requirements for health care professionals and facilities.
  3. Enact legislation that requires private health insurers to reimburse providers for the cost of interpreters, captioners, Braille and other ADA required accommodations.
  4. Ensure that Pennsylvania’s women with disabilities are able to receive a mammogram and other preventative diagnostic tests and imaging.
  5. Ensure that Pennsylvania’s Medicaid (Medical Assistance) providers are compensated for the additional time and/or staff may need to adequately meet the needs of their patients with disabilities.
  6. Institute a more flexible (part time) medical and dental education loan repayment program, using existing funds, to incentivize health care professionals to serve people with disabilities and other Medicaid recipients, especially in Pennsylvania’s underserved areas.
  7. Expand the number of Medical Homes in Pennsylvania for adults with disabilities.

Access to Healthcare for Women and Girls with Disabilities – A Report to Pennsylvania’s Legislators

Goddess Project – Because Every Goddess Deserves Good Healthcare

The Problems

The National Study of Women with Physical Disabilities by the Center for Research on Women with Disabilities found that “Thirty-one percent of women have had a physician refuse to see them because of their disability.” Women and girls should have equal access to healthcare resources.

There are multiple barriers for women with disabilities trying to access medical care:

  • Equipment such as adjustable exam tables, scales and mammography machines may not be available
  • Medical practitioners may not have experience and or comfort working with people with disabilities
  • People with disabilities may require extra time of the practitioners who are already pressed to see many patients in a short amount of time
  • Accessible communications (e.g.: sign language interpreters, large print, Braille, audio), print and electronic materials may not be available for women with disabilities

The Goddess Project focuses on advocacy for access to health care for Pennsylvania women and girls with disabilities.

  1. The project will create materials on healthcare topics for women and girls with disabilities that can be delivered to legislators and distributed via social media to create policy changes that increase access to healthcare.
  2. ACHIEVA staff will work with women and girls with carious disabilities (vision, hearing, physical, mental health and intellectual) to share their personal stories regarding their barriers to healthcare.
  3. The materials will include information from professionals and self-advocates on how to obtain necessary and desired healthcare supports and services.
  4. The materials will be placed online for easy access in addition to creating copies that will be on hand and delivered to each state legislator.

Please click here to view the Goddess booklet.


Healthcare Transition Summary

Special Needs Units

Operations Memorandum

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