Update on Children’s Personal Care Services (CPCS):

Snapshot of the Issue:

  • Children’s Personal Care Services, a critical support for many families of children with special needs, has instituted eligibility changes over the last year or so that have changed the amount of CPCS some children receive.
  • AHS communications around the “transition services” being designed by Designated Agencies to more appropriately meet the needs of children no longer eligible for CPCS have been confusing.
  • AHS is beginning a rulemaking process for CPCS, thanks to the efforts of the Disability Law Project and other advocates. (See attached.)
  • AHS will temporarily continue transition funding for families whose funds were set to expire on April 1, 2013.

CPCS is a critical component of support for many families of children with special needs across Vermont, and in some instances the only support they receive. CPCS provides assistance to children with disabilities and chronic conditions to enable them to accomplish tasks that they would normally do for themselves if they did not have a disability. The assistance may be hands-on assistance or cuing related to the performance of activities of daily living and Instrumental activities of daily living (ADLs and IADLs). Beginning in 2004 when administration of the program moved from the Department of Vermont Health Access (DVHA) to the Department of Disabilities, Aging & Independent Living (DAIL), the CPCS program expanded dramatically in part because other covered services were not available to children with special needs, including supports for behavioral challenges, communication, and supervision and safety. At the same time that CPCS expanded, access to waiver services for children decreased dramatically due to the narrowing of the Developmental Disabilities System of Care Plan funding criteria. Not surprisingly, during this period, the CPCS program grew at a rate of 20% per year, a rate the State found unsustainable.

In 2011, the CPCS program moved again from DAIL to the Vermont Department of Health (VDH). Under the direction of Children with Special Health Needs (CSHN) in VDH, the State revamped the program, adopting a new screening tool and changing the eligibility criteria. This had the effect of many children being found eligible for less personal care services or none at all, many of them having diagnoses of Autism Spectrum Disorder (ASD) or Attention Deficit Hyperactivity Disorder (ADHD). Beginning in April 2012, using the new screening tool, CSHN began reevaluating every child’s eligibility for the program. For children determined no longer eligible, the state reduced or terminated their CPCS benefit. Although families received notification of this decision, the letters were very confusing. Many families did not understand that their child’s benefits were reduced or terminated, ending their entitlement to CPCS. This is because CSHN provided families with “transition funding” as a temporary stop-gap measure. This transitional funding, initially for a period of six months, was supposed to provide families with an opportunity to contact their Designated Agencies and apply for “more appropriate” services designed to meet their child’s specific needs. AHS transferred funding previously earmarked for personal care services to the Designated Agencies who were directed to develop alternative services for children that better met their needs, and those of their families. Designated Agencies’ Children’s Mental Health and Developmental Services Directors have been working to create viable service and support alternatives, but it is not yet clear what this will look like in every region or how families will access them.

Because of advocacy efforts by Vermont Family Network, the Vermont Federation of Families for Children’s Mental Health, the Disability Law Project, and others, in January 2013, VDH agreed to revise the notices it sends to families to make them clearer and more understandable. Families receiving notices on or after January 1, 2013 will receive the new notices. Although there is still a question as to whether these notices are adequate, the Disability Law Project is recommending families do three things if they receive a notice: 1) appeal to the Human Services Board within 10 days of receipt of a notice, 2) request continuing benefits, and 3) contact the Disability Law Project. If families wait 90 days to appeal, they will lose the right to receive continuing benefits while the appeal is pending.

Any family whose transition funding is about to end should also file an appeal and contact the Disability Law Project. These families may have received unclear notices and not understood that their child’s entitlement to services ended when they started receiving transition funds.

The Disability Law Project has been working with the Agency of Human Services (AHS) and VDH to ensure that notices are adequate and that any changes to the CPCS program are legal and compliant with the Federal Medicaid Act. As a result of the Disability Law Project’s advocacy, the State agreed to initiate rulemaking and to temporarily continue transition funding for families whose funds were set to expire on April 1, 2013. This is a huge victory for families of children with special needs.

The State has circulated an initial draft of the proposed rule. At a meeting on April 15, 2013, Integrated Family Services Director Melissa Bailey and Deputy Commissioner of the Vermont Department of Health, Tracy Dolan, met with stakeholders to obtain feedback about the rule. In late May or early June, the state will begin the formal rulemaking process. At that time, they will issue a proposed rule for CPCS. The public will have an opportunity to comment on the rule by submitting written feedback and by attending a public hearing which is required by law. We understand that AHS plans two public hearings this summer. Meanwhile, advocates should review the informal rule and provide the state with comments (see attached). IFS Director Melissa Bailey welcomes comments and questions at

Changes in the systems of care that impact children with special needs are still being discussed and worked through at the state level, and disability advocates have been engaged in the conversations, particularly at the Vermont Coalition for Disability Rights (VCDR), the Act 264 Board which advises Integrated Family Services (IFS), the State Interagency Team, and the State Program Standing Committee, which advises Developmental Services.

Advocates are hearing from families who are worried about losing supports and services that help their children be stable and successful. Families are not hearing clear answers or clear solutions from the state or the designated agencies as to how their needs will be met by other, more appropriate resources than CPCS. We hope families will be meaningfully included as the state proceeds with the Integrated Family Services initiative. Disability advocates support a coordinated and comprehensive system of supports for children and their families. The system must be accessible, and seamless, and truly responsive to the needs of children and their families. Currently, IFS is in the planning stages, with a promising pilot in Addison County. The problem is that the state is moving forward with cuts to CPCS without adequate alternative services being readily available and before IFS is fully up and running. We need to be certain that, as the state implements cuts and sweeping changes to existing programs like CPCS, it is truly prepared to meet the needs of children who may no longer qualify for CPCS.

This leads us to the Early and Periodic Screening, Diagnosis, and Treatment (EPSDT) mandate. The Medicaid Exchange Advisory Board (MEAB) has revived its EPSDT work group. Advocates have shared concerns with DVHA Commissioner Mark Larsen relative to the lack of available EPSDT services. EPSDT mandates that states inform recipients of the availability of covered services, arrange for covered services to correct or ameliorate physical and mental health conditions, and to actually provide the services with reasonable promptness. Vermont has work to do in this area, especially as it pertains to children with developmental and intellectual disabilities. Many services for children are an entitlement under EPSDT. Services include in-home therapeutic and behavioral supports, crisis services, intensive care coordination, personal care services, etc. Children with disabilities and chronic conditions need these supports to live safely in their homes and communities. We believe that improvements in EPSDT compliance as a part of Vermont’s health care reform would alleviate many of the concerns that Children’s Integrated Services (CIS) and IFS are trying to address, and that families of children with special needs would be better served.

For more information, contact Kathy Holsopple, or Pam McCarthy,