Update from the Self-Directed Advocacy Network (MarylandSDS.org) regarding Ongoing Discussions with the Developmental Disabilities Administration

When DDA published a draft of Amendment 2 to the HCBS Community Pathways Waiver in summer 2016 self-direction advocates expressed alarm regarding DDA’s proposal to fundamentally alter Maryland’s remarkably successful self-directed services program. In August concerned self-direction services (SDS) participants and advocates formed the Self-Directed Advocacy Network (SDAN) in order to preserve and promote authentic self-direction for Marylanders with developmental disabilities. As a result of intense advocacy efforts from SDAN participants and others, DDA Deputy Director Bernard Simons suspended further changes to the Community Pathways Waiver, as it related to self-direction, on September 26 and agreed to form citizen Work Groups to submit recommendations to DDA regarding any future changes to SDS. Those Work Groups, which addressed Support Services, Family Involvement, Work & Community Development, and Residential Services, first met on November 30 and submitted their reports to DDA on February 17.

Some 25 SDAN members and other advocates finally had the pleasure of meeting with Mr. Simons at DDA’s Southern Maryland Regional office in Laurel on February 2. At that time work group members made informal presentations about key issues for self-directing participants. Mr. Simons listened graciously and announced that there would be no further changes to the current HCBS Waiver this year in regard to SDS. Instead, he stated that DDA is committed to an ongoing dialogue with stakeholders regarding any future Waiver changes and noted that henceforth, DDA administrators will work with a core group of self-direction advocates to create a draft of the complete Waiver renewal, which will be published sometime in Fall 2017. This timeline allows ample opportunity for public comment until the Waiver is finalized at the end of January 2018 for submission to CMS in time for the waiver renewal on July 1, 2018. While noting that he believes self-direction must remain in the Community Pathways Waiver, which also covers services offered by traditional providers, Mr. Simons agreed that self-direction is unique and that it therefore demands unique service definitions, rules and procedures. He further agreed that family members could work as staff so long as that reflected the needs and preferences of the participant and appropriate oversights were in place.

SDAN members and other advocates are delighted at the prospect of finally working in partnership with DDA staff. We recognize the challenges they face in administering services to thousands of Marylanders with developmental disabilities. We hope they recognize that the rights of those same Marylanders are our only agenda. We are committed to promoting a self-direction program in Maryland that faithfully reflects the guidelines for self-direction published by the Center for Medicare and Medicaid Services in which “participants have the responsibility for managing all aspects of service delivery in a person-centered planning process. Self-direction promotes personal choice and control over the delivery of waiver and state plan services, including who provides the services and how services are provided…. participants are afforded the decision- making authority to recruit, hire, train and supervise the individuals who furnish their services.” (https://www.medicaid.gov/Medicaid-CHIP-Program-Information/By-Topics/Delivery-Systems/Self-Directed-Services.html)

Since August 2016, SDAN members have generously volunteered our time, talent and treasure to promote the right of self-determination for Marylanders with developmental disabilities. We are thrilled that the challenges we have encountered have now brought so many capable self-direction advocates together. We bring passion, broad expertise and practical experience with self-direction to the Waiver renewal process. DDA administrators now have the remarkable opportunity to make self-direction for Marylanders better than ever.


SDAN is committed to ensuring that the following principles, processes and issues are adequately addressed as we move forward with the Waiver renewal and implementation:

  1. Participants should have the ability to self-direct all services available under CMS guidelines and regulations. The only plan restrictions should be those imposed by federal guidelines/regulations.
  2. Participant budget authority: as in previous self-direction waivers, the participant should retain the right to modify the services included in the participant directed budget without prior approval.
  3. Those involved in composing the Waiver renewal should start with the service definitions and procedures outlined in the original Independence Plus Waiver in Maryland, New Directions. Overall, this waiver worked well and featured clearly defined roles and procedures. DDA administrators and self-direction stakeholders and advocates should discuss the following questions: Where did it work well? Where is improvement needed?
  4. Face-to-face meetings between stakeholders and DDA staff to write the Waiver; DDA staffers and self- direction stakeholders and advocates should work in tandem rather than in separate, arms-length groups.
  5. The Waiver composition process should also include the simultaneous creation of a new Waiver handbook. This handbook should contain all the rules, procedures and service definitions written in user-friendly language so that participants, advocates, and others can readily understand how the new Waiver will actually function and what changes have been made to existing services. It should be available to the public during the 30-day comment period PRIOR to DDA’s submission of the final Waiver to CMS. It should contain all the information that DDA staffers need to administer the Waiver and that participants need to implement their own self-directed person-centered plans.
  6. Roles of the Support Broker, the CCS and the FMS should be clearly defined. This can be accomplished by gathering input from individuals from each of these various groups.
  7. Liability and insurance issues for participants, employees, families and SBs should be addressed and an equitable, affordable solution should be developed.
  8. Support Broker (re)certification trainings should utilize the combined expertise of current support brokers, representatives from one or both Fiscal Managements Services, self-advocates, family members and DDA staff.
  9. Self-directing participants also have overhead as well as traditional providers. Their budgets should not be reduced below the level of comparable individuals in traditional services.
  10. Addition of an independent advocate position for individuals who self-direct their services. The primary role of this advocate would be to safeguard the rights of self-directing participants. Any member of the self- directed participant’s team could contact this advocate whenever they have concerns regarding participant rights and the integrity of the person-centered plan. This position would be located outside of DDA and would also address overarching SDS issues such as encouraging networking among participants, assisting with developing or locating training and staff, and, in general, to facilitate the self-direction process. This advocate would also serve as an ambassador/promoter of SDS in Maryland and would work to ensure that all individuals eligible for DDA services are aware of their option to direct their own services.
  11. Regular tri-annual meetings between DDA Deputy Director Simons and authentic self-direction stakeholders and their advocates to keep the lines of communication open. This will prevent misunderstandings and allow DDA the input it needs to address constituent concerns quickly and efficiently.
  12. Regional offices should have well-informed staff and issue consistent information. DDA staff will implement the Customer Service principles espoused by the Hogan administration:
  • Friendly and Courteous: We will be helpful and supportive and have a positive attitude and passion for what we do.
  • Timely and Responsive: We will be proactive, take initiative, and anticipate your needs.
  • Accurate and Consistent: We will always aim for 100% accuracy, and be consistent in how we interpret and implement state policies and procedures.
  • Accessible and Convenient: We will continue to simplify and improve access to information and resources.
  • Truthful and Transparent: We will advance a culture of honesty, clarity and trust.