CCSDSMD Position Paper
Ensuring Access and Accountability in the Community Pathways Waiver Program
Who We Are
Concerned Citizens of Self-Direction Maryland (CCSDSMD) is a coalition of people with disabilities, family members, and professionals representing more than 4,000 participants in the Community Pathways Waiver.
Reform is Needed Now
Recent policy and operational changes to the Community Pathways Waiver program prevent many participants from accessing needed services, destabilize the workforce, and put participants at risk of crises or institutionalization.
To ensure that Marylanders with disabilities are able to live safely and well in their communities, as required by federal law, the Community Pathways Waiver program must be clinically grounded, responsive to participants and families, transparent, and accountable. The reforms outlined below are practical, fiscally responsible, and urgently needed to ensure the health and safety of participants.
I. Protect Self-Direction
The Problem
Recent changes to the Community Pathways Waiver program have limited participants’ ability to choose and direct their employees and services.
Why It Matters
Unless participants have choice of and control over their employees and services, self-direction becomes a hollow, “paper choice” that cannot be executed in practice—especially for individuals with complex needs who cannot rely on agency staffing.
CCSDSMD’s Solution
Affirm and protect full employer and budget authority for all self-directing participants, including authority over hiring, scheduling, rate-setting within approved budgets, and task delegation. These authorities must remain intact regardless of disability level, age, or administrative complexity.
II. Allow Health Benefits to Stabilize the Workforce
The Problem
Recent changes to the Community Pathways Waiver program prevent participants from offering dental, vision, and other healthcare benefits to their employees and require them to navigate excessive restrictions and uncertain approval pathways.
Why It Matters
Direct support work is demanding and low-paid, and turnover is often driven by the absence of health benefits. For medically complex individuals—who need caregivers able to manage ventilators, seizure protocols, behavioral supports, or feeding tubes—losing trained staff increases the risk of hospitalization, institutionalization, and family burnout.
CCSDSMD’s Solution
Ensure that participants can provide modest medical, dental, vision, and prescription stipends or reimbursements as allowable expenses. This can be achieved using existing waiver funds with minimal administrative burden, which will improve workforce recruitment and retention.
III. Restore Adequate Administrative Support
The Problem
Recent changes to the Community Pathways Waiver reduced the administrative support available under the self-directed service model from up to 40 hours per week to just 10 hours per month. This represents a 94% reduction for participants who must manage scheduling, timesheets, payroll, onboarding, compliance, and emergency staffing.
Why It Matters
Under the current model, the burden of administrative work has shifted almost entirely onto unpaid family caregivers—many of whom already provide round the clock personal care. This creates workforce instability and increases the risk of crises and institutionalization.
CCSDSMD’s Solution
Authorize up to 25 hours per week of administrative support by leveraging existing waiver funds. This will allow participants to recruit, train, and retain employees, reduce turnover, and prevent unnecessary reliance on emergency or institutional services.
IV. Remove Barriers to Individual and Family Directed Goods and Services (IFDGS)
The Problem
IFDGS is capped at $5,000 per year and conditioned on proving that no other payer will cover an item. This requires families to demonstrate exhaustion of insurance, charity, and other funding sources before the waiver will assist, creating delays and increasing the risk of crises and institutionalization.
Why It Matters
The items covered by IFDGS—including communication aids, transport supports, sensory tools, and remote monitoring—are often time-sensitive and crucial for health and safety. Delays do not save money; they increase risk and decrease community participation.
CCSDSMD’s Solution
Maintain the $5,000 cap but remove the requirement to prove payer exhaustion. This simple change reduces administrative waste, speeds up access, and aligns IFDGS with its purpose: to cover disability-related needs not met elsewhere.
V. Protect Services for People with Medically Complex Needs
The Problem
Participants who rely on Rare and Expensive Case Management (REM) and Community First Choice (CFC) for clinical supports face loss of services when transitioning into or navigating the DDA system. These individuals have the highest support needs yet often experience the most administrative barriers.
Why It Matters
Medically complex individuals depend on coordinated nursing, personal supports, and equipment to live in their homes. If these supports are reduced or denied, institutionalization becomes the default instead of the last resort.
CCSDSMD’s Solution
DDA must affirm that medically complex participants will not lose access to REM, CFC, or comparable supports when self-directing services.
VI. Establish Objective Criteria for Extraordinary and Enhanced Supports
The Problem
DDA’s recent removal of the Health Risk Screening Tool (HRST) eliminated the only objective clinical measure tied to enhanced supports. No replacement criteria have been implemented, and determinations now hinge largely on behavioral plans—even for individuals whose needs are medical rather than behavioral.
Why It Matters
Without objective clinical standards, approvals vary widely by region, coordinator, and reviewer. The result is a system where the same individual could qualify in one county but not another.
CCSDMD’s Solution
Either (1) Reinstate HRST or (2) Implement a transparent, functional, and medical-criterion‑based standard for extraordinary and enhanced support needs.
VII. Strengthen Accountability and Oversight
The Problem
Families report that DDA changes its policy and practice without receiving input from stakeholders, inconsistent application of DDA policy, unclear points of appeal, and limited accountability when waiver obligations are not met.
Why It Matters
The Community Pathways Waiver program provides essential supports for thousands of Marylanders. When the program lacks transparency, accountability, or consistency, emergency hospitalizations, institutional placements, and litigation increase—all of which cost the state more in the short and long term.
CCSDMD’s Solution
Require a 180-day period where DDA must seek, receive, and respond to stakeholder input before making or implementing substantive changes to Waiver policy or practice. Establish formal legislative oversight—such as a designated representative or committee—to receive complaints, monitor compliance, and support resolution when participants encounter systemic barriers.