Rosemary Collaboratory

This vital report is a powerful collection of stories and insights from numerous sources, including people with intellectual and developmental disabilities (IDD), their families and caregivers, healthcare professionals, and experts in the field.

By combining original survey results, compelling personal stories, expert recommendations, and drawing upon extensive research including insights from national and federal data sources like the National Core Indicators (NCI), the report aims to provide a full and honest picture of what's working, what isn't, and what needs to change in health services for individuals with IDD in Pennsylvania.

Access to quality health services is a fundamental right for everyone. However, for people with IDD in Pennsylvania, significant barriers persist.

The report highlights critical problems such as:

• Long wait times to get care: While the majority of survey respondents reported timely access to care, a notable percentage of individuals with IDD still face extensive delays in accessing necessary medical attention, underscoring a persistent challenge for some.

• Trouble understanding what doctors say: Communication breakdowns often occur due to complex medical jargon or insufficient accessible information.

• Doctors and nurses who aren’t trained to support people with IDD: A lack of specialized training among healthcare professionals can lead to inadequate and insensitive care.

• Health centers that aren’t easy to get to or use: Physical and systemic accessibility issues prevent many from receiving the care they need.

"While these challenges are significant, there is hope, and dedicated individuals and organizations are actively working on solutions," says Sherri Landis, Executive Director of The Arc of Pennsylvania.

Rosemary Collaboratory – Pennsylvania and its partners are taking concrete action to address these systemic issues by:

• Expand access to training for healthcare workers on caring for people with IDD.

• Support and implement the reinstatement of the statewide Governor's Cabinet and Commission on People with Disabilities.

• Increase data collection on health statistics and insurance coverage for people with IDD

This vital work is guided by people with IDD and their families. Their invaluable stories and ideas are instrumental in strengthening the healthcare system for everyone.

Rosemary Collaboratory - Pennsylvania is a leading initiative focused on improving health outcomes for people with IDD. It brings together a diverse group of stakeholders, including disability advocates, healthcare professionals, researchers, and government leaders. Consultants for the project include The Arc of Pennsylvania (TAPA) and Social Impact Studio. Additionally, partners like Special Olympics Pennsylvania (SOPA) and Special Olympics International (SOI) contribute valuable expertise and insights. The Collaboratory’s mission is to identify and address gaps in the system, working towards a more inclusive and equitable healthcare experience for all.