OUR POSITIONS ON NEEDED CHANGES

Coalition Vision and Mission

We believe that all children should grow up in families, and with the right supports this can happen for all children with disabilities. 

Coalition Position Statement

Learn our views about congregate care for children with disabilities.

coalition public comments and Position statements

2026

• Letter to PA legislators in response to MCO representative testimony at the June 9, 2026 Health and Human Services Subcommittee informational hearing on paying families for provision of skilled care to their children.

• Letter to PA legislators urging use of revenue from taxed games of skill to address the pediatric home health nursing shortage and expand the availability of HCBS waivers for children with developmental disabilities.

• Comments regarding proposed amendments to PA’s child residential facility regulations, addressing 1) the need for stronger permanency requirements, and 2) the critical need for medically-related health and safety provisions for residential providers who serve children with medical complexity, including a chart based on the health and safety regulations currently in place for medical day-care centers.

• Written Testimony submitted to PA House Human Services Committee on Paid Family Caregiving, Hearing of June 9

• Issue Brief: Sample State Approaches to Supporting Dependent Children Through Waivers with cover letter to Deputy Secretaries Ahrens and Miller-Wilson

• Letter to DHS re: Medicaid for children considerations in developing budget and DHS Response.

• Letter to DHS re: marked increase in pediatric home health service denials

2025

• Letter to OMAP re: home health rate cuts by a physical health MCO

• Comments on the DHS draft Complex Case Planning Bulletin

2024

• Comments to CMS on Bridges to Success: Keystones of Health for Pennsylvania, Section 1115 Medicaid Demonstration Waiver

• Comments on Bridges to Success: Keystones of Health for Pennsylvania, Section 1115 Medicaid Demonstration Waiver

2023

• Comments on HHS proposed rulemaking, Discrimination on the Basis of Disability in Health and Human Service Programs or Activities (Section 504), November 2023.

• Comments on ODP Proposal for Selective Contracting, July 2023

• Comments on CMS Access Proposed Rulemaking, July 2023

• Position Paper: Permanency Planning for Children with Disabilities Living in or at Risk of Admission to Facilities, May 2023

• Comments on MA Addition: Private Duty Nursing

• Letter to CMS re: Parents as Home Health Aides

2022

• Letter to Shapiro/Davis Transition Executive Director

• Comments on 55 PA Code 6100.56 Regulatory Compliance Guidelines

2021

• Comments on the proposed January 2022 ID/A Waiver: Memo and Chart

• Comments on the Consolidated, Community Living and P/FDS Waivers

• Comments on the DHS Initial Spending Plan for the ARPA of 2021

2020

• Position Paper: Addressing the Pediatric Home Shift Care Nursing Shortage in Pennsylvania

• Position Paper: Concerns Regarding Physical Health Managed Care for Children and Youth with Special Health Care Needs

• Comments on the DHS Managed Care Quality Strategy

• Comments on the Bureau of Maternal & Child Health’s Blue Print for Change: Guiding Principles for Advancing the System of Services for Children and Youth with Special Health Care Needs (CYSHCN) and Families

2019

• Comments on the Council on Reform Recommendations and attachment, CMC Nurse Specialist Proposal

• ODP Complex Case RFI Comments

• OBRA Waiver Proposed Amendments

• 55 PA Code Chapter 3800 Child Residential Facilities: Memo and Chart

• 55 PA Code Chapter 6400 Regulatory Compliance Guidelines: Chart/Appendix G

• Intellectual Disability/Autism Waiver proposed amendments

2017

• Proposed new Community Living Waiver

• Consolidated and P/FDS Waiver renewals

• Comments on the proposed ODP Regulation No. 14-540, including suggested language for addition Chapter 6100.

• Consolidated and P/FDS Waiver renewals

• Proposed Consolidated and P/FDS Waiver Renewals Appendices I and J

• Proposed consolidation of Departments of Aging, Drug and Alcohol Programs, Health, and Human Services into the Department of Health and Human Services

2015

• Proposed Individual Eligibility Policy for Consolidated and P/FDS Waiver Services

Coalition Action Memo

The PA Department of Human Services can apply its policies, practices, and funding resources to assure family life for children (0-21) with developmental disabilities currently living in or at risk of placement in institutions and other forms of congregate care. Click to read the full action memorandum. 

Read the Executive Summary Here.