The Down Syndrome Center of Western PA is a balanced team here to serve individuals of all ages who have Down syndrome and their families by providing comprehensive medical appointments, needed resources, and support. The Center is located at Children’s Hospital of Pittsburgh of UPMC and sees patients at nine clinic sites throughout the Western PA region. The Center is affiliated with the Down Syndrome Association of Pittsburgh, the National Down Syndrome Congress, the National Down Syndrome Society, and the Down Syndrome Medical Interest Group.
The Down Syndrome Center provides families with the tools they need to become educated and strong advocates of children and adolescents with Down syndrome. The center staff:
- Provides specialty health care to children and adolescents that is specific to conditions related to Down syndrome
- Consults with families regarding challenging developmental and behavioral concerns in children with Down syndrome
- Provides information to families about Down syndrome
- Offers support and follow-up to children recovering from an illness or surgery at the hospital
- Assists families in locating community services and resources
- Works with families with adolescents in developing transition plans to identify health care and community resources, as necessary, for adult health and well-being
Services include comprehensive medical assessments and referral of patients to specialists and adult services. The center also collaborates with the Adult Down Syndrome Center at UPMC Montefiore, the Down Syndrome Medical Interest Group (US), and the National Down Syndrome Society to investigate clinical problems in individuals with Down syndrome. A variety of educational resources are available through the center’s library.
The Down Syndrome Center of Western Pennsylvania:
- Provides information about Down syndrome to new families
- Refers families to support groups for parents and siblings
- Offers support to families of children who are recuperating from illness or surgery at Children’s Hospital of Pittsburgh of UPMC
- Assists families caring for a child, adolescent or adult with Down syndrome in locating medical, educational, recreational, social, and other resources in their communities
Clinical services using a preventive approach are available. These services include:
- Comprehensive medical assessments and care coordination for children and adolescents
- Referrals to sub-specialists who have expertise in meeting the needs of people with Down syndrome
- Adult specialty medical assessments provided by an internist who specializes in the care of adults with Down syndrome
Resources and Information
The Down Syndrome Center of Western Pennsylvania:
- Has a lending library of books, periodicals, and DVDs
- Provides current information about Down syndrome to families and professionals
- Maintains a file of articles on issues relating to Down syndrome
The Down Syndrome Center of Western Pennsylvania at Children’s Hospital of Pittsburgh of UPMC practices a unique, comprehensive approach to care. The center provides training for pediatric and medical/pediatric residents, genetic counselors, and physical therapy students.
The Down Syndrome Center collaborates with the Down Syndrome Medical Interest Group, the National Down Syndrome Society, and the National Down Syndrome Congress to investigate the clinical problems experienced by individuals with Down syndrome.
The Down Syndrome Center is committed to helping our patients make a smooth transition from pediatric to adult health care. This process involves working with youth, beginning at ages 12 to 14 years of age, and their families to prepare for this change. Presently, the pediatric model of healthcare involves the parents and health care provider making decisions for the patient. In the adult health care model, youth take on more of the decision making which is a new responsibility for them. The Healthy Transitions Program is designed to assess the teen’s readiness, from a developmental perspective, to assume an active role in decision making. Identification of the teen’s needs in other areas of his/her life will also be an important element in the Healthy Transitions Program. Preparation for transitions to adult health care and community living have the best outcomes when the teen and the family can work on the identified goals and connect with community resources early in the teen years. This program is a service provided through the Down Syndrome Center of WPA at Children’s Hospital of Pittsburgh of UPMC. Andrew McCormick, MD, faculty clinician for the Down Syndrome Center of WPA, is the Director of the Healthy Transitions Program.
The Down Syndrome Center has recently added a behavioral health component with the addition of Dr. Tarin Santimaria, Licensed Psychologist. Her role will be working with our families with behavioral evaluations, behavioral interventions, and parent-trainings.