1. -Transforming the Medical Model of Care –
Changing Landscape. . .
Integrating Disability into Public Health:
Parent Resource Coordinators are Community Health Workers
Sarah Swanson, BS CPH; Megan Shepherd, MS; Becky Skoglund, MA; Rachel Ray, MA; and Mark Smith, MS;
Munroe-Meyer Institute, University of Nebraska Medical Center, Omaha, NE 68198
Peer-to-Peer Mentors/Community Health Workers and the Integration of Disability and Public Health
-Transforming the Medical Model of Care –
Overview
PRCs Connect Families to Resources
New Models of Care and Care Delivery
Families of children with disabilities experience disparities in accessing healthcare especially in minority, non-English speaking families.
Source: Genetic Alliance, Family Voices 2013
Working towards the ‘Triple Aim’
Source: Institute for Healthcare Improvement, 2016
February 2015 to September 2016
Value-Based Care
Medicaid Managed Care
Families are the backbone of our long-term services and supports…
37% provide 1-4 hours every week of direct care or coordinating care.
Source: MCHB 2013
These families face inadequacies in health insurance coverage…
22% of families indicate that they have encountered financial hardships.
Source: MCHB 2013
They provide care beyond that of a typically developing child…
25% have either quit working or reduced hours to care for their child.
Source: MCHB 2013
Inter- disciplinary Care Teams
Improve patient satisfaction
Decrease costs
Improve health outcomes
Medicaid Health Homes
Accountable Care Organizations
Medical Homes
* Site is most recent addition
Penalties for preventable hospital readmissions
Culturally Competent Care
Peer-to-Peer Mentors and Parent-to-Parent Programs have long been recognized as an integral part in ensuring that people with disabilities and families who have children with disabilities receive social support, and information to achieve independence and optimal health outcomes. These Peer-to-Peer mentors and Parent-to-Parent networks meet the definition of Community Health Workers (CHWs) within Public Health. With recent changes under Medicaid and the Affordable Care Act listing CHWs as ‘health professionals who function as members of a health care team,’ there is an opportunity to transform the medical model of care. Specifically, integrating individuals with disabilities or parents of children with disabilities who have demonstrated expertise to work as members of the healthcare team could transform the medical model by helping to connect individuals with chronic illness or disability to community resources and support.
Historically, members of the disability community have expressed frustration with the medical model which focuses on an individual’s deficits. Instead, they have gravitated toward the social/ecological model which focuses on the environmental deficits that do not allow individuals to fully participate in their communities. Whereas the medical model works to ‘fix’ illness and disability, the social/ecological model instead calls for environments to be built so that individuals can have the proper supports to achieve independence. Similarly, public health recognizes that more than clinical care improves health, but the places that individuals live, and work; that their education, income level and employment, or the social determinants of health is what impact their health.
The Family Care Enhancement Project
The Family Care Enhancement Project (FCEP) places Parent Resource Coordinators (PRCs) in medical clinics to provide information and support to families that have children with disabilities and special health care needs. The project is funded by Nebraska’s Part C, Early Intervention Program. PRCs are parents or family members who have experienced navigating the resources their family member with a disability needs in order to achieve optimal health outcomes. PRCs help connect families that have a newly diagnosed child with a disability to the Early Development Network and other community resources.
PRCs are currently located in clinics at the UNMC Munroe-Meyer Institute, within federally qualified health centers, a research hospital and a large pediatric clinic. Efforts are underway to identify placement for future PRCs.
Goals of the FCEP include:
Improve the referral process to the Early Development Network and ensure that the results are provided to the referring clinic.
Improve health outcomes for the child with disability/special healthcare need.
Identify resources to assist the family and child to be fully integrated in the community (e.g., early intervention programs, assistive technology, rights within schools, etc).
Assist families who have children with disabilities or special health care needs to access applicable supplemental insurance programs such as Medicaid, Medicaid Waiver programs, and Respite, etc.
Connect families with other families who have similar needs for support.
Evaluate project to obtain family and clinician satisfaction and demonstrate impact.
Help clinics working to build medical homes deliver patient/family-centered, culturally competent care.
Training Curriculum: An online training curriculum was designed to train Parent Resource Coordinators and provide them the knowledge and skills needed to work effectively with diverse families of children with developmental disabilities and/or chronic health conditions. It is a competency-based training that allows the PRCs to acquire specific knowledge and skills required to support families and reflect best standards of practice.
Program Evaluation: A database that tracks each PRCs activities and outreach efforts has been developed. Referrals to community programs, number of family contacts and outreach efforts of each PRC is collected and reported to the granting agency/clinics quarterly. The database tracks each PRCs activities and outreach efforts. Families must sign a consent for their information to be included in evaluation reports. However, a lack of data consent does not prohibit the PRC from supporting the family.
A Changing Landscape…
The Patient Protection and Affordable Care Act specifically lists Community Health Workers as health professionals who function as members of health care teams.
In 2013 there was a change to federal Medicaid rules that opened the door for potential reimbursement for preventive services offered by CHWs.
DOL estimates that there will be a 25% increase in demand for these workers by 2022.
- American Public Health Association, 2016
“Community Health Workers (CHWs) are frontline public health workers who are trusted members of and /or have an unusually close understanding of the community served. This trusting relationship enables CHWs to serve as a liaison/link/intermediary between health/social services and the community to facilitate access to services and improve the quality and cultural competence of service delivery. CHWs also build individual and community capacity by increasing health knowledge and self-sufficiency through a range of activities such as outreach, community education, informal counseling, social support and advocacy American Public Health Association, 2016
Parent Resource Coordinators are Community Health Workers
Next Steps
Survey consenting families, collaborating clinics and community partners to measure impact.
Identify additional clinics to collaborate.
Increase consenting families.
Identify funding to expand the project scope of ages served and statewide reach.
An Answer to Healthcare’s Blindside*…
- Four out of five (20%) physicians say patients’ social needs are as important to address as their medical conditions, according to a new survey conducted by Harris Interactive on behalf of the Robert Wood Johnson Foundation.
- Furthermore, 4 in 5 physicians do not feel confident in their capacity to meet their patients’ social needs, and they believe this impedes their ability to provide quality care.
- Physicians surveyed feel so strongly about the connection between social needs and good health that 3 in 4 wish the health care system would pay for the costs associated with connecting patients to services that address their social needs if a physician deems it important for their overall health.
-*RWJF 2011
References
American Public Health Association. Community Health Workers; Available from:
Genetic Alliance; Family Voices. Children and Youth with Special Healthcare Needs in Healthy People 2020: A Consumer Perspective. Washington (DC): Genetic Alliance; 2013 Feb. Chapter 1, Children and Youth with Special Healthcare Needs, Then and Now. Available from:
Parent to Parent US, Available from:
Independent Living Research Utilization (ILRU). Building an Effective Peer-to-Peer Network; Available at:
Robert Wood Johnson Foundation. Healthcare’s Blindside; Available from:
U.S. Department of Health and Human Services, Health Resources and Services Administration, Maternal and Child Health Bureau. The National Survey of Children with Special Health Care Needs Chartbook 2009–2010. Rockville, Maryland: U.S. Department of Health and Human Services, Available from: