Welcome to your new journey. DSALA would like to congratulate you on the birth, or the expected birth, of your baby! We understand your concerns, fears, and questions. We do want you to know that you are not alone. In the coming days and months, your best resources will be other parents. Families with children who have Down syndrome can help you look beyond your child‘s diagnosis and see the true joy of parenting your baby. We hope the DSALA community can walk this journey with you. We hope the DSALA community can accompany you on this journey.
The DSALA offers an informative New Parents’ Packet containing essential details about your newborn with Down syndrome. This resource aims to connect you with a supportive parent network in your local community. Click below to request a packet and receive your New Parent Packet. Join our database to stay updated on events, news, research, and other valuable information.
The Regional Center System
Regional centers are nonprofit organizations in California that contract with the Department of Developmental Services to support individuals with developmental disabilities. The Regional Centers assist our children and their families in accessing the necessary early intervention programs and therapies to meet their needs. They serve as local resources to help access various services.
Key roles of regional centers include:
- Planning, accessing, coordinating, and monitoring essential services.
- Using a person-centered planning approach involving the individual, family, and staff to tailor services based on personal choices and aspirations.
- Offering free diagnosis and eligibility assessments to facilitate service access.
Once eligible, a case manager helps create a service plan and provides information on available services. Most services are free, regardless of age or income. More information can be found on the DDS website.
Some of the services and supports provided by the regional centers include:
- Assessment, diagnosis, and referrals
- Lifelong individualized planning and case management
- Assistance in finding and accessing community and other resources
- Payment for services included in the IPP/IFSP for which other funds are not available
- Advocacy for the protection of legal, civil, and service rights
- Early intervention services (Early Start) for at-risk infants and their families
- Vocational services
- Supports to help ensure individuals can remain within their family
- Planning, placement, and monitoring for 24-hour out-of-home care
- Training and educational opportunities for individuals and families
Community education about developmental disabilities
Parents must contribute to costs for 24-hour out-of-home placements for children under 18 based on financial capacity. Additional co-payment requirements may apply for certain services.
FIND YOUR LOCAL REGIONAL CENTER
Down Syndrome: The Journey Ahead
Produced by the Down Syndrome Association of Greater Cincinnati
A 15-minute film with parents talking about their journey with a child with Down syndrome.
Down Syndrome for New Parents: What to Know During the First Year | Mass General Brigham
What can you expect having a baby with Down syndrome? Learn about common co-occurring conditions that go along with Down syndrome and the medical playbook to ensure those conditions are managed. Brian Skotko, M.D, M.P.P., Medical Geneticist and Emma Campbell Endowed Chair on Down Syndrome at Mass General Hospital for Children, explains what parents can expect during the first year of raising a child with Down syndrome, including information on breastfeeding, necessary testing, and more.
About Down Syndrome
Brian Skotko, MD, MPP, Resident in the Department of Medicine at Boston Children's Hospital, answers several questions about Down syndrome.
