Working with the Disability Community Starts with Meaningful Outreach and Relationship Building

The objective of our project in Freehold Borough is to remove barriers to health care experienced by people with disabilities. The project is being undertaken by three community partners: the Borough of Freehold, the nonprofit Neighborhood Connections to Health (NCTH), and the Freehold Family Health Center, a Federally Qualified Health Center. The group aims to identify action items and make recommendations to enhance the Health Center’s services to people with disabilities.

One of the key aspects of our approach to this project is to include people with disabilities in the decision-making process. We couldn’t begin to align ourselves with this work without learning directly from people with lived experience. For us, this means building meaningful relationships with people with disabilities, their loved ones, caregivers, and service providers. In our view, building trust is a cornerstone of the project’s success.

We started by educating the community about the project at various NCTH programs like their mobile food pantries, COVID-19 vaccination clinics, and Intergenerational Community Kitchen. The Freehold Family Health Center and Mayor’s Wellness Campaign Committee also reached out to potential partners and participants. Together we recruited a diverse group of community members, including people with physical and developmental disabilities, parents of children with disabilities, and professionals with related work experience.

Our outreach efforts continued with a family health event called Veggies & Vaccines, which offered a variety of free health services from an array of providers. We worked with the Commission for the Blind and Visually Impaired, the Brain Injury Alliance, NJ SPAN, CentraState Medical Center, health insurance companies, and other community-based organizations. Freehold Family Health Center offered tours of the facility, flu and COVID-19 vaccines, HIV tests, vision exams, and cancer screening appointments. An ASL interpreter was available, and if people had physical limitations, we offered vaccinations in their vehicles. There was also a mobile food pantry with fresh produce, meat, and dairy. Everything was free. We wanted to learn what services people with disabilities needed and were most likely to use.

Next, we conducted a series of community focus groups in both English and Spanish. This was a more direct way to learn about health care needs and barriers experience by people with disabilities. We invited people with physical and developmental disabilities, their families and caregivers, and professionals in the field. We asked thought provoking questions such as:

“How do you define health?”

“What health care barriers do you feel impact you, your client/consumer, or your loved ones with disabilities when seeking medical care?”

And the team heard great feedback from the participants:

“Quality of life, environment, access to care, not only medication, making sure you can get a doctor’s appointment to receive the best quality of care regardless of insurance.”

The people we’ve met during this process and the insights we’ve gained from them are shaping our next steps. Our aim is to engage and empower people with disabilities, their families, caregivers, and service providers; to remove the health care barriers they experience; and to make access to medical care more equitable for everyone.

If you’re part of the Freehold community and you would like to take part, there are plenty of opportunities to get involved:

• Join one of our upcoming focus group sessions. Sessions will be taking place in person in Freehold during January- March 2023. We will be summarizing the key points from these discussions in a report (without associating information included) available to the community.
• Provide written testimony to our team about how barriers to health care access for people with disabilities has affected you, your loved one, or those you serve, particularly in Freehold.
• Take part in personal interviews with our team to highlight your health care needs and barriers to care. Issues might include medical insurance coverage, transportation to appointments, cost of or access to medication or specialized services. Our goal is to help Freehold Family Health Center consider these challenges and look for areas of improvement.
• Become a leader on our Patient & Family Advisory Council. Meetings are held monthly to discuss the systems, patient needs, and best practices for people with disabilities at Freehold Family Health Center. If you are a patient at the Center who would like more information about this Council, or a resident of the Freehold area interested in joining a focus group, offering written testimony, or being interviewed, please contact: Jenna Sistad at 732-589-0259 or ncthnj@gmail.com.

What we’ve learned is that if you engage people, they will respond. If we listen and advocate alongside people with disabilities, we can remove barriers to health care.

The Freehold community is thankful to have the support of the Inclusive Healthy Communities program sponsored by the New Jersey Department of Human Services, Division of Disability Services, to make this work possible.