The Texas Council for Developmental Disabilities has supported a number of projects to address access to healthcare for people with complex medical needs and developmental disabilities. Three projects and their outcomes are highlighted below including Baylor College of Medicine Transition Medicine Clinic, Project DOCC Houston and Texas Parent to Parent Medical Education.
Baylor College of Medicine Transition Clinic (bcm.edu/healthcare/care-centers/transition-medicine)
In January 2005, Baylor’s Combined Medicine-Pediatric Program started a Transition Medicine Clinic with the goals of:
- Delivering a medical home to adolescents and young adults with chronic illnesses who are transitioning their health care from pediatrics to the adult health care system.
- Assisting adolescents, young adults and their families to transition services from the pediatric-subspecialist to the adult-subspecialist.
Social worker support started in January 2006. The clinic takes care of patients with diagnoses such as spina bifida, sickle cell disease, congenital heart disease, autism, Down syndrome, cerebral palsy, and survivors of childhood cancer; collaborates with Texas Children’s Hospital, Shriner’s Hospital, Harris Health System and their Adolescent Medicine Clinic, and the City of Houston; trains primary health care providers in the specific expertise needed to deliver age-appropriate health care services to adolescents and young adults who have chronic diseases or disabilities of childhood; and has become a resource for the community on transitioning youth with special health care needs.
With the funding provided by TCDD, the Transition Medicine Program was able to offer consultative services to 266 patients, ages 14-25, transitioning from pediatric to adult healthcare; educate physicians on transition issues/services; provide training & outreach to health professionals & community providers; and provide 311 people with needed health services.
Project DOCC Houston (www.projectdocchouston.org)
Project DOCC Houston recruits, trains and assigns duties to parent teachers who provide “training” to the pediatric residents by meeting with the residents and facilitating home visits. They also provide a comprehensive understanding of life with a child with chronic illness or disabilities.
- During their period of grant funding from TCDD (2002-2007), Project DOCC Houston presented 13 Grand Rounds Panel Presentations (GRPP) at a variety of hospitals and universities.
- All pediatric residents were scheduled for the Project DOCC training as a part of their curriculum.
- The Resource Guide for Parents of Children with Disabilities, Houston and Surrounding Areas, along with information on Medical Home concept and the principles of Family-Centered Care were provided for all the pediatric residents.
Evaluation information from TCDD funded project: Data was collected from the pediatric residents’ pre- and post-evaluations of their participation in Project DOCC and the parent teacher evaluations of the residents from 2003 to 2007.
- After participating in Project DOCC, residents were more likely to believe that the parents of children with chronic illness or disability should have an active and equal role with physicians in making all decisions related to their child’s care.
- An overwhelming majority of the residents rated the parent educators very high, 87% to 98%.
- A majority of the residents indicated that participating in Project DOCC made them more willing to work with children with chronic illness/disabilities and their families, 75% to 84%.
- A very strong majority of parent teachers, 95% to 96%, described the residents as showing interest in the discussions held during the home visit or parent interviews.
- A very strong majority of parent teachers, 87% to 97%, described the residents as asking relevant questions during the interviews.
- 85% to 91% of the parent teachers reported that the residents appeared to understand the parents’ perspective.
- Finally, 77% to 98% stated that the residents appeared to be open to the “principle of partnering with a parent of a child with a chronic illness or disability.”
Texas Parent to Parent Medical Education Program (www.txp2p.org/training/med.html)
Texas Parent to Parent (TxP2P) provides Pediatric and Family Practice Residents and other members of the medical community with a comprehensive understanding of life with a child with chronic illness or disabilities.
TxP2P created 5 different Medical Residency Programs (MEd.) in collaboration with 4 hospitals; 3 Pediatric, 1 Family Practice and 1 Osteopathic Program. Each program had different numbers of residents and family faculty. Several programs also provided presentations to nursing classes and ECI programs.
- Almost all of the residents indicated that they were impressed by the love and dedication of the parents to their children.
- Residents learned that the orders they wrote were sometimes difficult to carry out at home.
- Residents learned that they could do more to help than just treat the child – by providing resources and support for the family, the child will be in a better environment and do better.
MEd., TxP2P, was invited to join the Medical Home Work Group through the Department of State Health Services Children with Special Health Care Needs Program (CSHCN). This enabled them to train Family Faculty and they, in turn, could train the Residents. They have been been able to provide the Group with a parent perspective on medical and insurance issues and education on parent/family supports.