Maryland's New Self-Directed Care Policies Raise Serious Concerns for I/DD Families

For thousands of families managing care for loved ones with developmental disabilities in Maryland, the daily rhythm of caregiving is about to face new challenges. Recent policy changes affecting self-directed Medicaid waivers have sparked significant concern among caregivers and advocates who understand just how precious time and energy are in the caregiving journey.

What's Happening?

The Maryland Department of Health has implemented new policies, effective November 21st, that transform how families manage self-directed care. This affects approximately 3,600 families who have chosen to create customized care programs rather than using traditional facility-based services – a choice that often better serves their loved ones' unique needs and circumstances.

"Where's the fire? Why are you rushing to implement these policies without talking to us?" shares Ginger Houston-Ludlam, whose 26-year-old daughter receives services through self-directed care. Her frustration echoes throughout the community, as families face increasing administrative burdens on top of their caregiving responsibilities.

Key Changes Affecting Our Families:

• More detailed timesheet and invoice documentation requirements

• Changes to the wage increase process for care aids

• Modified requirements for support brokers

• Additional paperwork for accessing allocated funds

While the Department of Health maintains these changes will "help reduce processing delays" and ensure better oversight of taxpayer funds, families and advocates are raising valid concerns about potential consequences:

• Delayed payments to essential caregivers

• Risk of losing dedicated staff and vendors

• Additional administrative burden on already stretched families

• Less flexibility in managing individualized care needs

For families navigating these changes, here are some immediate steps that may help:

1. Connect with the Self-Directed Advocacy Network of Maryland for updated guidance

2. Keep detailed records of any challenges encountered with the new system

3. Share your experiences with state officials

4. Join local advocacy efforts to ensure family voices are heard

Looking Ahead: While these changes are now in effect, there's hope for continued dialogue. The Department of Health has expressed commitment to "ongoing process and engagement with our provider and participant communities." For families already managing complex care needs, this presents an opportunity to shape future policies that better serve our community's needs.

We recognize the tremendous work families do every day to ensure their loved ones receive the best possible care. As these changes unfold, remember that you're not alone in this journey. Your experiences and challenges matter, and your voice is essential in creating positive change for our community.

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