Profiles of Patient and Family Advisors and Leaders
Medical Home Team Member: Ashley Peterson
Ashley Peterson calls Camerynn, her five-year-old daughter, her miracle baby. Camerynn was born with a rare brain disorder called schizencephaly. Prior to her birth, one doctor predicted that if the baby lived, she would be extremely and profoundly disabled. At birth, not only was Camerynn beautiful, but she did not have nearly as many disabilities as predicted. Camerynn has cerebral palsy, a seizure disorder and is developmentally delayed, but is not far behind her peers cognitively. Much of her disability is physical; she has both speech and motor delays. Her vision is fine, and her hearing is good. She drives a motorized wheel chair, and is beginning to learn how to use a walker. Camerynn vocalizes rather than talks, as she cannot say consonants. She uses some simple sign language (complex signing isn't an option because of her motor problems), and other augmentative and alternative communication (AAC) devices. Camerynn goes to both preschool and a Head Start program.
Ashley is very active in United Cerebral Palsy (UCP) of Central Minnesota. She started volunteering in 2003, to give back to the organization that gave her so much support during Camerynn's first two years of life. Ashley has served on multiple committees and was a speaker at several annual local UCP events. She has also worked on fundraisers, made brochures, designed a billboard, made calls, setup events, and helped with mailings. She became a Board Member and in 2004, Ashley was named the Volunteer of the Year for UCP of Central Minnesota.
In 2004, Camerynn's pediatrician, Dr. Marilyn Peitso, asked Ashley to participate in the Medical Home Project at the CentraCare Clinic for Women & Children. Ashley is a member of the clinic's "Medical Home Team" which consists of three parents, the pediatrician, the pediatrician's nurse, and a care coordinator.
"Medical Home", a national initiative sponsored by the American Academy of pediatrics, provides comprehensive primary care for children with special health care needs. A medical home is defined as "primary care that is accessible, continuous, comprehensive, family centered, coordinated, compassionate, and culturally effective . . . the pediatric clinician can help the family/patient access and coordinate specialty care, educational services, out-of-home care, family support, and other public and private community services that are important to the overall health of the child/youth and family." Source: www.medicalhomeinfo.org
In 2005, Ashley and her team received a grant from the National Collaborative of Medical Home teams, in which teams from multiple states participated. Her team traveled to Dallas and Washington, D.C. to meet with others from all over the country. The teams also met via web conference to share information, support, and training. Many parents and medical providers hope that the Medical Home concept will become the standard of care nationally.
As a result of the Medical Home project and a family focus group, CentraCare has initiated the following:
- Individual health care plans are written for each child and are used by the parents, doctors and other medical providers. If a child comes to the emergency room, the individual health care plan can be accessed via computer. This provides ER personnel immediate, complete, accurate, and up-do-date information concerning that child's medical condition and treatments that will facilitate appropriate care. These written health care plans make it easier for parents to keep track of medical information, and facilitates communication with a variety of specialists.
- Various environmental aspects of the clinic are now more "user friendly." The clinic now has wheel chair accessible scales to weigh young patients who cannot stand on a traditional scale. The main doors to the clinic are now handicapped accessible. A special phone line was installed, so parents can alert the staff of their arrival. Staff can meet them in the parking lot to help many of the young patients who are in wheel chairs into the clinic while their parents park the car.
- A parent-to-parent group serves as an advisory council, and meets once a month offering advice, support, speaker programs, and training programs. The triage nurses received training to be more patient- and family-friendly when parents call in. Parents no longer have to give the nurse detailed explanations prior to speaking with the doctor. Also, the appointment process has improved since the computer system has been flagged to allow children with special needs longer appointment times, if necessary.
Ashley and Camerynn have both benefited from the changes in the clinic. Her work at the Medical Home has been a great learning experience for Ashley. She's had the opportunity to travel, hone her public speaking skills, and has been treated as a professional, as people value what she has to say as a member of the Medical Home Team. That experience has increased Ashley's self-confidence and enables her to work more effectively with the United Cerebral Palsy Foundation.
Ashley Peterson is 21 years old and has an Associates Degree in advertising from St. Cloud Technical College. In addition to her volunteer work, Ashley has worked as a personal care assistant for other families with children with special needs. Her knowledge of systems has enabled her to be paid as Camerynn's personal care attendant by a state funded program. In the fall, Ashley plans to work in the school system.
Camerynn is the poster child for United Cerebral Palsy for Central Minnesota. She will start kindergarten in the fall. Camerynn loves to play soccer with her mom, ride her adaptive bike, swim, fly a kite, play computer games, and will soon be starting Little League for kids with special needs.