Title: Family Opposition to Proposed Medicaid Waiver Changes — Protect Individualized Care, Family Choice, and Continuity of Services
We are submitting this comment as a family of an individual with a disability who depends on reliable supports to maintain health, safety, dignity, and the ability to live in the community. We respectfully but strongly oppose the proposed 56-hour weekly soft cap on personal assistance and the elimination of independent Services Facilitation in favor of the proposed Support Broker model unless meaningful protections are established to prevent harm to waiver participants and their families.
These proposals are not simply administrative changes. They have the potential to affect whether individuals with disabilities receive the assistance they need and whether their families can continue providing care safely and sustainably.
1. Personal assistance must be based on individual needs, not an arbitrary threshold.
Every person with a disability has unique functional limitations, supervision requirements, safety risks, and daily care needs. Some individuals require substantially more than 56 hours of assistance each week. Their needs do not disappear because they exceed a designated threshold.
We are concerned that a “soft cap” may become a practical hard cap if exceptions are difficult to obtain, decisions are delayed, or families must repeatedly prove needs that have already been evaluated through the person-centered planning and authorization process.
Families should not be required to fight a new administrative battle simply to preserve care that has already been determined necessary.
We ask DMAS to preserve individualized authorizations based on documented needs. Existing authorizations should not be automatically reduced merely because they exceed 56 hours. Any request for additional hours must be evaluated using clear, objective criteria, with reasonable deadlines and a meaningful appeal process. Care should continue while a timely request or appeal is pending whenever a reduction would jeopardize health or safety.
2. Do not eliminate independent Services Facilitation without demonstrating that families will receive equivalent or better support.
Services Facilitators provide practical assistance that goes beyond completing paperwork. They help individuals and families navigate consumer-directed services, understand employer responsibilities, address attendant enrollment and authorization issues, and resolve administrative problems that can otherwise interrupt care.
Families often rely on established relationships with professionals who understand their circumstances, their support needs, and the challenges they face. That knowledge and continuity have real value.
Replacing this relationship with a Support Broker assigned through a fiscal-employer agent does not automatically guarantee equivalent support. Families need to know how the new model will work in practice, how quickly problems will be resolved, and who will be accountable when services are delayed or disrupted.
We ask DMAS to preserve independent Services Facilitation as an option, or at a minimum provide meaningful choice among qualified providers, including the ability to retain an existing facilitator when feasible. The state should demonstrate that the replacement model provides comparable individualized assistance, accessibility, responsiveness, and accountability before eliminating the existing service.
3. Protect continuity of care during the transition.
A disruption in administrative support can quickly become a disruption in actual care. Delays in attendant enrollment, service authorizations, timesheets, or payroll can have serious consequences for individuals who cannot safely go without assistance.
DMAS should establish enforceable transition protections before moving any region to the new model. These protections should include:
Adequate staffing and training for Support Brokers before implementation.
Advance, accessible notice to every affected individual and family.
Clear identification of the person and organization responsible for resolving each type of problem.
Timely transfer of records, service plans, authorizations, and relevant information.
Published response and resolution timeframes, with a direct escalation process when problems remain unresolved.
No interruption of authorized care or attendant payments solely because of the administrative transition.
A clear process for reporting problems and requesting a different broker when the assigned provider cannot meet the individual's needs.
DMAS should monitor actual outcomes, publish transition performance information, and delay implementation in any region that is not prepared to protect continuity of services.
4. Preserve meaningful oversight and due process.
We are also concerned about removing the additional DMAS nurse review when a CCC+ level-of-care review determines that an individual no longer meets eligibility criteria.
An erroneous determination can place essential services at risk. Families should not have to discover an error after care has been reduced or terminated and then bear the burden of correcting it through an appeal.
We ask DMAS to retain this additional review safeguard. Any proposed changes to oversight should clearly identify how errors will be detected, how families will be notified, and how services will be protected while a disputed determination is reviewed.
5. Do not shift administrative burdens onto families who are already providing substantial care.
Families caring for people with significant disabilities frequently coordinate medical appointments, medications, supervision, transportation, daily living assistance, employment of attendants, and numerous administrative requirements. These responsibilities can be demanding even when the system functions properly.
A policy that appears more efficient from an administrative perspective may create additional work, delays, uncertainty, and stress for families. If those burdens make it harder to maintain reliable care at home, the result could be greater risk to the individual and greater pressure on family caregivers.
DMAS should explain how the proposed changes will improve outcomes, what evidence supports the new model, how costs and administrative responsibilities will change, and how the department will ensure that families do not bear additional burdens without adequate support.
6. Preserve the purpose of home- and community-based services.
Medicaid waiver services help individuals with disabilities receive necessary support in their homes and communities. Their effectiveness depends on services that reflect individual needs, reliable attendants, informed decision-making, and a system that responds when problems arise.
Reducing administrative costs or standardizing procedures should not come at the expense of those outcomes. Nor should families have to accept a less responsive system without evidence that it will provide equal or better protection for the people who depend on it.
We also urge DMAS to address the separate concerns surrounding Electronic Visit Verification for live-in caregivers through the appropriate process, with recognition of the practical realities of family caregiving and safeguards against unnecessary administrative burdens.
Our requests to DMAS are straightforward:
Do not impose automatic reductions in existing personal assistance authorizations based on the proposed 56-hour threshold.
Preserve individualized, person-centered determinations and establish transparent, timely, and accessible exception and appeal procedures.
Preserve independent Services Facilitation as an option and meaningful choice among qualified providers.
Require demonstrated transition readiness and enforceable protections against interruptions in care, authorizations, and attendant payments.
Retain the additional DMAS nurse review safeguard for adverse CCC+ level-of-care determinations.
Publish clear implementation guidance, accountability standards, outcome measures, and a process for families to raise concerns and obtain timely resolution.
Meaningfully involve individuals with disabilities, family caregivers, and experienced service providers in evaluating and refining these policies.
We understand that Medicaid programs must be administered responsibly. However, responsible administration must begin with the needs, safety, and dignity of the individuals the program exists to serve.
For families, these are not abstract policy decisions. They affect whether our loved ones can receive the assistance they need, remain safely in their homes, and participate in their communities with dignity. Families should not have to choose between navigating an increasingly complicated administrative system and ensuring that their loved ones receive dependable care.
We respectfully urge DMAS to reconsider these proposals, preserve individualized services and meaningful family choice, and establish clear, enforceable safeguards before implementing changes that could jeopardize continuity of care.
Thank you for considering the perspective of families who live with the consequences of these decisions every day.
Howard Jack Benkert
Family Member