Rhode Island
Spotlight Project:
Rhode Island Parent Information Network (RIPIN) and the RI Department of Health announced the addition of a new pilot project to help youth and adult patients find extra supports and navigate systems when they visit their primary or specialty care doctor. It’s called Peer Assisted Health Initiative (PAHI).
According to RIPIN Associate Director Lisa Schaffran, “We’ve had such tremendous success with our Pediatric Practice Enhancement model - reaching out to families of children with special health care needs - that we now will add a similar program for youth and adults. We know this peer support style program can truly make a difference in the adult world.”
PAHI certified medical practices will have a RIPIN trained Consultant (called a Peer Navigator) on hand to offer support and guidance to patients and assist practices to provide a patient-centered medical home. Peer Navigators will provide information about state resources, the employment system, social services, support groups, or other information about particular issues pertaining to the patients with disabilities, special healthcare needs or chronic conditions. Utilizing the empowerment model that RIPIN is known for, a PAHI focus will be on the transition from pediatric to adult healthcare, an area of need that individuals and families have identified as a huge challenge.
“The Department of Health’s research has shown there is a definite need for continuity of care as children with special health care needs grow up, and the Office of Special Health Care Needs is addressing this through the PAHI program,” says Lisa Schaffran. “In addition, PAHI support will be available to all patients in the practice, especially those with chronic care issues including asthma, diabetes, heart disease, and cancer.”
Any general medical practice interested in submitting an application for the program is invited to visit the RIPIN website: www.ripin.org.
Founded in 1991, the RIPIN is a statewide nonprofit organization with a collective programmatic reach that extends to every Rhode Island community. RIPIN’s mission is to inform, support, and empower parents, families, individuals, and family-serving professionals who seek to become effective advocates for their families, children, themselves, and their communities. They serve more than 65,000 Rhode Islanders each year.
RIPIN
175 Main Street, Pawtucket, Rhode Island 02860
tel 401.727.4144 / fax 401.727.4040
www.ripin.org
7/09
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“A Quality Assurance Project to Assess Provision of Clinical Genetic Services to Newborns Identified through the Rhode Island Newborn Screening Program”
The RI Newborn Screening Program is in the planning phase for a collaborative study with the National Newborn Screening and Genetics Resource Center regarding genetic services for newborns identified with genetic disorders through the RI newborn screening process. RI will soon join the project, which is already ongoing in a few other states outside the New England region.
In the first part of this study, researchers wanted to know if newborn screening programs were documenting whether or not families with infants identified with genetic disorders through newborn screening, were receiving clinical genetic services. After reviewing state genetic plans and surveying a range of newborn screening specialists, they determined that routine tracking of this aspect wasn't happening. They went on to encourage newborn screening programs to track genetic services for the families' benefit. Click here to read a PubMed Abstract of a relevant article published in Genetics in Medicine in August, 2007.
7/08