Children with Medically Complex Conditions
The Department of Human Services (DHS) values relationships and family as a foundational element for the growth and development of children.
DHS has a vision for all children to live meaningful lives with families in the community. DHS strives to provide a comprehensive approach to serving children, youth, and young adults – birth to 21 years of age – through programs that focus on early intervention, healthy development, strong relationships, family stability, community integration, and safety.
Jump to:
Who are Children with Medically Complex Conditions?
Some children require additional supports and services to successfully live in the community with their family. DHS oversees multiple systems of care that collaboratively plans for children across the life span by strengthening services to families, reducing risk, and preventing facility admissions. Children with Medically Complex Conditions are often included among children who require additional supports and services. DHS generally defines children with medically complex conditions as individuals age 0 through 21 with a chronic health condition that affects three or more organ systems and requires medically necessary skilled nursing intervention to execute medical regimens to use technology for respiration, nutrition, medication administration or other bodily functions.
Pediatric Complex Care Resource Centers
- Family Facilitator
- Call Center
PA Family Network: Family mentors with personal experiences can provide guidance and support in navigating system questions.
Valuing All Voices
DHS is also supporting providers and other stakeholders by providing capacity building opportunities.
- Children with Medically Complex Conditions Cross Systems Meetings include DHS staff from the Transition Home Team and providers from across the state who support children with medically complex conditions in residential or day care settings. These meetings provide training and engagement opportunities for providers. Recorded trainings can be accessed here.
-
The Medically Complex Conditions Training Series is a 6 part training series developed for providers within the Office of Developmental Programs. This training series focuses on key topics relevant to any provider who directly supports children with medically complex conditions.
- OCDEL maintains the
Early Intervention Technical Assistance Portal which offers professional development trainings on many different topics around supporting the social, emotional, and developmental needs of children.
Making Changes and Supporting Families
The Office of Developmental Programs has changed some programs to better support the needs of children and their families by infusing dollars and changing the system to help kids live with their families in the community.
-
Targeted Support Management (TSM) for Individuals Served by the Office of Developmental Programs – On March 1, 2022, DHS issued a bulletin explaining the expansion of TSM services available to children with complex medical conditions. TSM services assist individuals with creating a vision of how they want to live an everyday life now and in the future. It also supports planning for how to achieve that vision and helps individuals gain access to needed medical, social, educational, and other services. The purpose of TSM is to promote an individual’s right to an everyday life utilizing person centered planning and self-determination principles.
-
Referring Children to the County Intellectual Disability and Autism Programs Bulletin – On July 12, 2022, DHS provided guidance to child serving systems on how to refer children to county MH/ID programs when a child has a diagnosis of an intellectual disability, developmental disability, and/or autism (ID/DD/A). Referring children in this way can provide eligible children and their families with access to information, services and supports in the community, as well as preparing for life’s transitions through childhood into adulthood. This can help fill any gaps that may exist within other child serving systems and prevent a lapse in services when transitioning from child service systems to adult service systems.
-
Waiver Eligibility and Services – On July 1, 2022, DHS expanded eligibility in ODP waivers to include children under age 22 with a developmental disability due to a medically complex condition. ODP also added customized services available to children with medically complex conditions in the community. Through these expansions, children with medically complex conditions have the potential to access ODP waiver services to increase their chance to live an everyday life in the community.
-
Licensing – DHS is reviewing its licensing structure and amending regulations to provide better oversight and monitoring of pediatric facility settings(?) caring for children with medically complex conditions. These changes will help ensure the health and safety of all children temporarily residing in these settings.
DHS Efforts to Support Children with Medically Complex Conditions