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Emerging Solutions

Case Study: The Arc of Massachusetts

Sam Donaldson of New Zealand with the First Medal of the Summer Games for 800m Freestyle Swimming in Athens, Greece, June 2011

THE PROBLEM

People with intellectual disabilities experience health disparities as the result of difficulty accessing health care services. Implicit bias contributes to non-person first thinking and assessment, as well as diagnostic overshadowing, which is the process in which health professionals wrongly presume that present physical or emotional symptoms are a consequence of the patient’s intellectual disability.

BACKGROUND

The Arc of Massachusetts understands the need for further education regarding looking beyond behaviors or stereotypes to accurately diagnose and treat conditions for this population. Operation House Call (OHC) is a program of The Arc of Massachusetts. OHC partners with medical and health professional schools to educate students on how to enhance care for people with intellectual disabilities. The program has grown to over 600 students and over 200 families participating. The following medical schools have OHC programs: Boston University School of Medicine, Tufts University School of Medicine, and University of Massachusetts Medical School. OHC programs are also provided at Simmons College of Nursing and Health Science and Yale School of Nursing. OHC’s program begins to address the fear, bias and lack of knowledge at the early stages of a young doctor’s education. The program provides experiences with families and individuals where they learn first-hand about the challenges that come with medical care.

SOLUTION

The students are provided with foundational and experiential learning through a four component program, which begins with a 2-hour parent instructor lecture with a half hour of co-teaching from an individual with an intellectual disability. The parent instructor lecture focuses on the following learning objectives:

  • Model person first behavior and understand person first thinking and language.
  • Review supportive ways to deliver unexpected or difficult news to parents.
  • Practice building rapport in a home visit to a family who has a family member with intellectual/developmental disability (IDD).
  • Monitor personal or subjective bias that might affect an evaluation or treatment of a person with IDD.
  • Demonstrate sensitivity to sibling and family issues during the family visit or in-class discussion.
  • Increase awareness of resources available to families, including a broad overview of public education support.

Next, to complete a 2-hour home visit, students are paired with a family in the community who has a child or an adult with an intellectual disability. The students are then required to write a reflection essay in the OHC privacy-protected forum, where the parent instructor gives feedback and resources. Families give feedback on their experience through an evaluation of the student, and students can further expand their learning through a wide array of resources available on the OHC website.

CHALLENGES

OHC is typically part of orientation for third year medical students. The fact that the course is not for credit presents challenges related to buy-in and sustainability. Having OHC implemented as a required part of curriculum would alleviate this challenge. Additionally, OHC has challenges related to funding, as it relies on grants and donations.

BENEFITS

Students, families, individuals with disabilities, and medical school administrators have all given positive evaluations of OHC. Over 200 families continue to volunteer and individuals with intellectual disabilities have opportunities to “co-teach”, which they report brings them confidence and joy. Students report that they feel more ready to treat patients with disabilities, including intellectual disabilities, with greater interest and compassion. Students also recognize implicit bias that can affect the delivery of health care services.

LESSONS LEARNED

Partnering with health professional schools is an effective way to integrate the OHC model into education of health professionals.

ADDITIONAL RESOURCES

OHC’s public website is http://www.operationhousecall.com, which houses a variety of resources, including learning objectives, home visit materials, sample questions for families, and videos. For student participants, additional resources are available, which the OHC parent instructor shares with students based on their reflection essays.

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