The Pediatric Complex Care Association examines the demands of children with medical complexity and provides a national voice for them. It’s essential we share the expertise of our Member organizations with regulators and health care agencies to build a network of support that will provide quality care for these children and their families.


September 2016, The Centers for Medicare & Medicaid Services (CMS) has contracted with RAND to develop standardized assessment-based data items to meet the requirements as set forth under the IMPACT Act of 2014, Section 2(a). The contract name is “Development and Maintenance of Post-Acute Care Cross-Setting Standardized Assessment Data”. PCCA submitted comments on behalf of our Membership – CMS RAND Standardized Assessment Data Comments.

May 2016, We are interested in hearing more success stories for children with medical complexity aging out of Post-Acute Care (PAC) or receiving successful community or family placements from a PAC setting. Discharge Success Stories – May 2016 is a sample from a few Members shared with the Centers for Medicare and Medicaid Services. A Member organization may send any success stories to

March 2016, Our Association created Sample Patient Assessment Data – March 2016. This is to provide a snapshot of typical patients cared for by a Member organization. From this data sample, the IMPACT Act Data Sample – March 2016 demonstrates how the first child in the assessment sample is measured across three different reporting tools- MDS, IRF-PAI & Oasis. Due to the detail involved, we selected only two common indicator areas for children with medical complexity – Respiratory/Special Treatments & Functional Status. The last column on the chart represents interventions and potential measurement data that provide a clearer picture for a pediatric patient. While our Association continues to support the development of standardized measurements across Post-Acute Care (PAC) settings, this small sample illustrates that current measurement tools do not clearly capture what is needed for quality measures, resource use and improved outcomes for children. These documents were shared with the Centers for Medicare and Medicaid Services.

January 2016, Children and Young Adults with Medical Complexity: Serving an Emerging Population, A White Paper prepared for Centers for Medicare and Medicaid Services

July 2014, The Improving Medicare Post-Acute Care Transformation Act of 2014 (IMPACT Act of 2014) was drafted by the House Ways & Means and Senate Finance Committees in March 2014. The IMPACT Act requires post-acute providers to report standardized assessment data. The proposed legislation does not currently recognize the lack of appropriate assessment tools and quality indicators (QI) for children. Our Association respectfully suggested a modification to this legislation to include a requirement for the Centers for Medicare & Medicaid Services (CMS) to develop assessment and QI tools appropriate for the Pediatric population and that, until such tools are available, Pediatric facilities be exempt from the reporting requirement. This would ensure the use of a tool that takes into account quality measures and outcomes in caring for children. Letters were sent to Senator Ron Wyden, Chairman, Senate Finance Committee and Congressman Dave Camp, Chairman, House Ways and Means Committee in support of all Association Members.


February 2016, Kentucky Disabilities Coalition Advocacy Event- Letters of support for children with medical complexity aging out of Post Acute Care settings were sent to Gov. Bevin, Sen. Seum, Rep. Bratcher, Rep. DeWeese and Rep. Osborne in support of KY Members – Home of the Innocents and Lora Mercurio.

April 2014, Florida Senate Bill 1586 and Florida House Bill 1247 provide essential clarification on the provision of care to children with sub acute care needs, the facilities that provide these services and the regulatory agencies that monitor compliance. Letters were sent to Sen. Sobel and Rep. Waldman in support of FL Member – Broward Children’s Center.

October 2013, Massachusetts Senate Bill 511: An Act Relative to Eligibility Criteria for Pediatric Nursing Homes, eliminates the Department of Public Health’s Medical Review Team approving all pediatric admissions into a skilled nursing facility. Letters were sent to Sen. Welch and Rep. Walsh, Chairs of the Joint Committee on Health Care Financing, in support of MA Members – New England Pediatric Care, Plymouth Rehabilitation & Health Care Center and Seven Hills Pediatric Center.