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CAN MARYLAND ACTUALLY PROVIDE THE SUPPORT PEOPLE NEED?

Maryland Provider Capacity and Family-as-Staff Survey

WHY WE ARE ASKING

Thank you for taking the time to share your experience. Your response will help us understand whether Maryland has enough qualified direct support professionals (DSPs), staff, and providers to meet the needs of people with intellectual and developmental disabilities.

The federal Centers for Medicare & Medicaid Services (CMS) has asked Maryland’s Developmental Disabilities Administration (DDA) to demonstrate that participants can access the services they need through both the provider-managed model and Self-Directed Services (SDS).

In this survey, provider-managed model refers to the service delivery model historically called “traditional providers” or “traditional provider services.”

We want to understand whether Maryland has enough actual provider and workforce capacity to meet participants’ needs—not simply whether services are authorized, a provider is listed in a directory, or an agency reports having an opening.

Can participants find qualified staff who can meet their individual needs, work the necessary hours, and provide support safely and consistently? How long do they wait? How many authorized hours go unfilled? What happens when qualified staff cannot be found?

We also want to understand how much Maryland’s service system depends on family members working as paid direct support staff because qualified non-family workers are unavailable.

Your answers will help Concerned Citizens document the relationship between participant needs, provider and workforce capacity, family-as-staff arrangements, and the real-world consequences when people cannot obtain the support they need.
BEFORE YOU BEGIN

Thank you. Your experience matters, and we appreciate your time.

Please complete one survey per participant. A participant, family member, representative, Coordinator of Community Services (CCS), support broker, or other professional familiar with the participant’s services may complete it.

Participation is voluntary. Please do not include the participant’s name or other identifying details in your answers.

The survey should take approximately 10 minutes, depending on which sections apply.

Answer based on the participant’s current situation and actual experience. Estimates are welcome when exact numbers are unavailable.

If a question does not apply, select “Not applicable” or skip it when permitted.

Responses will be summarized to inform Concerned Citizens’ advocacy and discussions with decision-makers. This is a voluntary community survey, not a random or statistically representative sample of all Maryland participants.
IMPORTANT DEFINITIONS

Self-Directed Services (SDS): The participant directs their services and is involved in recruiting and managing their support staff.
Provider-managed model: Services are arranged and delivered through a DDA provider agency. This is the model historically referred to as “traditional providers” or “traditional provider services.”

Paid family staff: Under the DDA definition of family as staff under Waiver Amendment #3 (Natural or adoptive parents, Stepparents, Grandparents and step-grandparents, Children and stepchildren, Siblings and stepsiblings, Aunts and uncles, Nieces and nephews) a family member or relative who is paid to provide direct support to the participant, including through SDS.

Paid non-family staff: A direct support worker who is not a family member or relative.

Provider-managed staff: Staff employed or supplied by an agency delivering provider-managed services.

Unpaid family care: Help provided by relatives without pay, including when family members must fill gaps because paid staff are unavailable.

Actual staff-hours: Hours of support actually delivered by paid staff, not merely authorized or budgeted hours. If two staff are needed for one hour, count two staff-hours.

60/40 family as staff cap: DDA’s new definition in Waiver Amendment #4, if it goes into effect, would limit the combined paid hours provided by family-as-staff to no more than 60 hours per week, while no individual family-as-staff member could provide more than 40 paid hours per week. The 60-hour limit applies to the combined hours provided by family-as-staff across all participants they serve. Please note that DDA may grant exceptions in certain emergency or unplanned circumstances.
SECTION 1: ABOUT THE PARTICIPANT
1.In which Maryland county does the participant live?
2.Which DDA service delivery model does the participant currently use?
3.What types of support does the participant need? Select all that apply. No diagnosis details are required.
4.What services and staffing levels is the participant receiving? Select all that apply.
5.What is the participant’s current Health Risk Screening Tool (HRST) score?
SECTION 2: ACCESS TO THE PROVIDER-MANAGED MODEL
Complete this section if the participant receives or has sought provider-managed services. Otherwise, skip to Section 3.
6.Has the participant or their team looked for provider-managed DDA services?
7.What was the outcome of the most recent provider search? Select all that apply.
8.How long did it take to find a provider that was an appropriate match?
9.If an appropriate provider was found, approximately how long would a one- way trip from the participant's home to the service location at the usual travel time?
10.If the appropriate provider was found, which DDA region was the service location?
11.If a provider—not DDA—previously declined, ended, or reduced services, how long did the participant go without those authorized services or hours?
12.Overall, how much of the participant’s authorized support is actually being delivered through the provider-managed model?
SECTION 3: SELF-DIRECTED SERVICES—FINDING AND KEEPING STAFF
Complete this section if the participant uses SDS. Otherwise, skip to Section 4.
13.How long has the participant been self-directing?
14.Are all of the participant’s needed SDS staff hours covered right now?
15.In the past 12 months, what happened when you tried to hire non-family staff through SDS? Select all that apply.
16.When you most recently hired a staff member, approximately how long did it take from the start of the search until the person began working?
17.In the past 12 months, how many non-family staff have left the participant’s SDS team?
SECTION 4: FAMILY MEMBERS AS PAID STAFF Complete this section if a family member is paid to provide direct support through SDS. If no family member is paid to provide support, skip to Question 24.
18.Why are family members providing paid direct support to this participant? Select all that apply.
19.How many family members, as defined by the DDA, are currently paid to provide direct support to this participant?
20.How many combined paid staff-hours do family members provide to this participant per week?
21.If the participant’s paid family caregiving hours were reduced because of changes to wages or rules, what do you expect would happen? Select all that apply.
22.Approximately how many paid family staff-hours per week could be lost or reduced?
23.If paid family staff hours were reduced or lost, would qualified non-family staff be available to replace them? Select all that apply.
24.If replacement hours are needed, approximately how many hours per week remain without confirmed coverage?
25.What concerns do you have about finding qualified non-family replacement staff who can meet the participant’s specific needs? Select all that apply.
SECTION 5: UNCOVERED HOURS AND REAL-WORLD CONSEQUENCES
26.Does the participant currently have support hours that are not covered by paid family or non-family staff?
27.If yes, approximately how many hours per week are uncovered?
28.How long have those hours been uncovered?
29.Who covers the hours when paid support is unavailable? Select all that apply.
30.What has already happened because needed paid staff or provider-managed services were unavailable? Select all that apply.
31.If the participant could no longer self-direct, has a provider-managed agency confirmed that it has qualified staff, can cover the required hours, and has a start date for services?
32.Optional comments: What makes you confident that a provider could—or could not—meet the participant’s needs?
33.If the participant could no longer self-direct, what do you think would happen? Select all that apply.
34.Could unpaid family care safely and sustainably replace the paid support hours that might be lost?
SECTION 6: FINAL COMMENTS AND OPTIONAL FOLLOW-UP
35.Would you be willing to be contacted by Concerned Citizens for further information or to help with advocacy efforts?
36.If you agreed to be contacted, please provide your name and contact information below. Providing this information makes your response identifiable to the organizers?
37.Please add any additional comments you feel are important.
Thank you for sharing your experience. Your response helps document the difference between services authorized on paper and support that people can actually obtain. We need to understand not only whether Maryland has providers, but whether it has enough qualified workers to meet participants’ real needs—and how much the system depends on family members to fill the gaps. Every response helps build a clearer picture of provider capacity, the DSP workforce shortage, the role of paid family staff, and the consequences when people cannot obtain the support they need.