President’s Committee for People with Intellectual Disabilities (PCPID)
Committee Meeting Minutes
March 23-24, 2017
- Jack Martin Brandt, Chair
- James T. Brett (March 23)
- Kenneth Capone
- Micah Fialka-Feldman
- Tawara Goode
- Dan Habib
- Zachary W. Holler
- Lisa Pugh
- Rebecca Salon
- Deborah Spitalnik, PhD
- Ricardo T. Thornton, Sr.
- Liz Weintraub
- Betty Williams
Ex Officio Members and Representatives
Benjamin O. Tayloe, Jr. and Clarette Yen
Representing the Honorable Jeff Sessions, Attorney General, U.S. Department of Justice
Representing the Honorable Alexander Acosta, Secretary (unconfirmed), U.S. Department of Labor
Representing the Honorable Betsy DeVos
Secretary, U.S. Department of Education
Melissa Harris (March 24)
Representing the Honorable Tom Price, Secretary, U.S. Department of Health and Human Services
Representing the Honorable Chai R. Feldblum, Commissioner, U.S. Equal Employment Opportunity Commission
Disability and Inclusion Advisor
Corporation for National and Community Services
The Administration on Intellectual and Developmental Disabilities (AIDD) - PCPID Staff
Bob Williams, Acting Designated Federal Official, PCPID
Allison Cruz, Director of Innovation
Sheila Whittaker, Management Analyst
The PCPID Meeting Proceedings
Greetings, Call to Order, and Introduction of PCPID Chair
Bob Williams, Acting Commissioner,
PCPID, Acting Designated Federal Officer
Acting Commissioner Bob Williams welcomed participants to the Spring 2017 meeting and called the meeting to order, then handed the meeting over to the chair for the PCPID, Jack Brandt.
Jack Martin Brandt, PCPID Chair
Chairman Brandt welcomed participants, and thanked the members for their work on creating an outline from which work on the Report would be drawn.
Mr. Williams informed the Committee that the paperwork for incoming members’ appointment and reimbursement had not yet been processed, and that the five new members would not be able to act as formal committee members in this meeting. He committed to keep the Committee informed on developments with regard to the executive order establishing the Committee, which will expire soon.
Mr. Williams expressed optimism at the opportunity for Charlie Lakin to act as consultants on Direct Service Providers (DSPs) for the purpose of creating thoughtful, succinct recommendations.
Approval of Agenda and Minutes
Jack Martin Brandt, PCPID Chair
Chairman Brandt presented the agenda and asked for a motion to approve. The motion was made by Deborah Spitalnik and seconded by Micah Fialka-Feldman. Chairman Brandt presented the minutes for the November 30 meeting and asked for a motion to approve them. The motion was made by Mr. Fialka-Feldman and approved by Ms. Spitalnik. The Committee voted to accept the minutes as well as the meeting agenda. Motion carried.
Jack Martin Brandt, PCPID Chair
Chairman Brandt asked the members to present themselves and identify their affiliations with the Committee.
Update on the Status of the 2017 Report to the President and Moving Forward
Jack Martin Brandt, PCPID Chair
Chairman Brandt explained that the Committee produced an outline on February 28, and has held two workgroup meetings since the Winter 2016 meeting. The contractor in place to write the report was selected later than expected.
Chairman Brandt suggested that the Committee create two or three overarching goals for the Report, then create a 20-30 page report with ten key recommendations. Deborah Spitalnik agreed, adding that more broad recommendations may be useful in a potentially changing Medicare fading landscape, and that the Committee should be a voice for the need for DSPs. Jim Brett agreed that the Report should be concise.
Report out on Workgroup Preliminary Findings and Recommendations and Committee Feedback
Dan Habib, Citizen Member, presented the outline created by the workgroup on the impact of DSPs on individuals and families. While the Workgroup had not yet determined specific recommendations, they determined that the Report should include education on the role of DSPs in helping people with IDD and their families get back to work and become involved in their communities. There is a lot of great research on DSPs that has emphasized the importance of training, supervision, high expectations, and paths for additional professional opportunities for DSPs.
Mr. Williams suggested incorporating the needs that families and individuals have for their DSPs into a recommendation. Mr. Habib agreed, adding that the need case for DSPs may be tied in with the increasing elderly population.
Zach Holler, Citizen Member, highlighted self-direction, and recommended simplifying the process of recruiting DSPs to help families and individuals with IDD understand what they can expect from a DSP. He expressed concern state Medicaid boards’ attempts to define necessary services based on condition can limit self-direction and may not include non-medical assistance.
Andy Arias, Department of Labor, recommended that the Report clarify the necessity of DSPs to enable people with significant disabilities to return to work. Deborah Spitalnik, Citizen Member, highlighted the importance of the role of long-term services in the economics of full participation. Mr. Habib agreed, and added that research by RespectAbility has found that language focusing on just access and equal opportunity can be more appealing to lawmakers than language that defines these services as human rights or civil rights.
Jim Brett, Citizen Member, highlighted the importance of retention and recruitment of DSPs.
Ricardo Thornton, Liz Weintraub, and Deborah Spitalnik, Citizen Members, expressed concern at the prospect of linking the needs of people with IDD with those of the elderly. While coalition building can emphasize the need for DSPs, the Committee must begin by clarifying the role of DSPs to people with IDD. Betty Williams and Deborah Spitalnik, Citizen members, highlighted elderly people with IDD, who will also need DSPs. Benjamin Tayloe, Department of Justice, highlighted the opportunity for people with IDD to return to work.
Mr. Holler asked if the Report should define DSPs for its use to avoid confusion. Mr. Habib clarified that the connection with the elderly would serve to explain the need for DSPs but not to define them.
Benjamin Tayloe, Department of Justice, presented the outline developed by the Econonic Impact Workgroup. There is significant evidence of the huge gap between demand and supply for DSPs. The challenge to the workgroup will be identifying solutions to those structural problems.
Dan Habib informed the Committee that AIDD’s “Competency-Based Training and Worker Turnover in Community Supports for People with IDD” could be found in the Committee’s Google Drive.
Zach Holler, Citizen Member, highlighted the need to balance the need to legitimize DSPs as professionals with the frustrations people with IDD feel towards the idea of needing professional support. Mr. Tayloe highlighted the need to balance the need for credentialing DSPs with the frustrations of family members who are serving in a direct support role. Reconciling these two tensions is incredibly important, and may involve finding other means of increasing DSPs’ mobility and value.
Ms. Weintraub highlighted the symmetry in the disrespect that DSPs and people with IDD face. Agencies who send in DSPs may not be consistent with staffing, which erodes self-direction.
Mr. Habib asked whether the goal of the Report should be to expand DSP workforce or respond to the DSP workforce crisis. Continuing to allow families to provide direct support with compensation would save money by lowering the need for institutionalization and keeping families economically sustainable. Tawara Goode added that the Report should make it clear that while families should have the option to provide direct support, they should not be universally expected to.
Chairman Brandt clarified the members, meeting locations and remote dial-in phone numbers for the Workgroup discussions. Mr. Williams clarified that the new members would not be able to vote as members, but could sit in on Workgroup discussions.
Workgroup Discussion Period
The Workgroups met separately to compose their recommendations to present the following day.
Jack Martin Brandt, PCPID Chair
Chairman Brandt thanked the Committee for their work. Dan Habib suggested a 15-minute discussion before the following minute to review recommendations to present. Chairman Brandt recessed the meeting until the following morning.
Call to Order
Jack Martin Brandt, PCPID Chair
Chairman Brandt called the meeting to order; and introduced Dr. Amy Hewitt, University of Minnesota.
Workgroup Report Out
Dan Habib, Citizen Member, presented the workgroup on the impact of DSPs on individuals and families. Mr. Habib re-emphasized the importance of providing a definition of DSPs; and demonstrate that existing funding streams for DSPs are critical in keeping people with IDD healthy, working, and in the community, as well as keeping their families working.
The workgroup created a list of essential qualities in DSPs. These qualities informed their five recommendations:
- The creation of a federal credentialing standard to establish a consistent skill base for DSPs; which would include education on person-centered planning, respect for privacy, cultural and linguistic competence, disability rights and self-advocacy. Some states have attempted to create such standards but have had challenges with funding. There should be incentives for the worker and the employer to go through certification.
- The creation of a career ladder or lattice and opportunities for raises, specialization, and continued professional development opportunities.
- Ensuring that funding streams that currently support families or individuals hiring their own DSPs, including certain waiver programs, exist and can potentially be expanded.
- Expand the self-directed model so that individuals with IDD are able to hire, recruit, interview, and if needed fire their own DSPs. This also allows more money to go to DSPs, rather than agencies.
- Including credentialing for DSPs in WIOA’s work at American Job Centers and community colleges.
The workgroup also raised the idea that people with disabilities should be able to work as DSPs, which could employ people with IDD who need employment while filling the employment gap of DSPs. Mr. Habib invited the Committee to discuss whether families and individuals hiring and maintaining a DSP are adequately protected. He raised the possibility of an RFP for an online database to match DSPs with individuals with IDD, and noted the workgroup’s discussions of a cooperatives for workers in a self-directed model. The Report should contain real stories and struggles to relate to its recommendations.
Tawara Goode, Citizen Member, raised concerns for liability safeguards for family, individuals, and DSPs. Lisa Pugh, Citizen Member, added that cooperatives allow for liability protections for their workers. Liz Weintraub, Citizen Member, agreed that liability is important, and expressed concern that liability may stand in the way of getting the right DSP.
Andy Arias, Department of Labor, expressed his appreciation for discussions of DSP career pathways.
Zach Holler, Citizen Member, suggested that the Committee raise guidance that states remove the law preventing DSPs from holding power of attorney. Ms. Pugh encouraged the Committee to address the importance of Medicaid in its report, as 80% of providers rely on Medicaid funding to fund their DSPs. Bo Tayloe raised the possibility of investigating managed care incentives.
Bo Tayloe, Department of Justice, presented the recommendations for the workgroup on economic impact of DSPs, which he split into two categories. The workgroup had six substantive recommendations:
- Engaging the broader workforce system to support the development of the DSP workforce through mechanisms like WIOA that embrace concepts such as high demand professions and people returning to work.
- Ensure meaningful opportunities for job satisfaction and advancement including through career ladder, training, and living wage to professionalize the DSP workforce.
- Equip and treat DSPs as community navigators rather than home healthcare aides.
- Create interest for new DSPs to enter the field, rather than barriers through intense credentialing systems.
- Ensure that there are multiple methods through which DSPs can be hired.
- There should be a Federal Mandate for states to provide more cost effective home and community-based services.
In addition to the recommendations above, the workgroup had five strategic considerations:
- Any recommendation in the Report should be tethered to federal policy.
- Focus on the narrative that DSPs enable others to work and help minimize avoidable reliance on public benefits.
- Address the economic and other impact of insufficient wages.
- Address cultural and gender issues and the distinct economic consequences for those issues.
- All recommendations should be tied to existing structures from which success stories can be drawn to demonstrate viability.
Chairman Brandt invited the Committee to discuss the use of technology for planning or home monitoring. Mr. Habib asked whether the Report’s title and objective should focus on employing more DSPs or responding to the DSP workforce crisis. PCPID’s 2015 Report focused on ways technology can help individuals meet daily needs. While technology could be used to bolster the work of DSPs, it’s important not to suggest that technology can replace DSPs.
Andy Arias, Department of Labor, highlighted the opportunity to incorporate the language of the new Administration into the Report. He also emphasized the importance of making community-based services the first choice and making institutionalization the last choice. Lisa Pugh, Citizen Member, agreed, and expressed appreciation for inclusion of living wage concerns.
Ms. Pugh added that Medicaid provided guidance in 2013 on how Medicaid funds can be used to support training and develop training systems. Perhaps this guidance should be reissued, with added incentives for training.
Ashley Martin, EEOC, clarified that the EEOC has a final rule set to take effect in January 2018 that imposes a requirement that federal employees with targeted disabilities who need personal assistance services are provided those services during work hours and for work-related travel.
Tawara Goode, Citizen Member, highlighted the Committee’s mission to represent people with intellectual and developmental disabilities, as other organizations represent DSPs. Ms. Weintraub raised concerns for DSPs feeling disrespected when the individuals with IDD to whom they provide care lash out physically. Ms. Pugh replied that these conflicts could be minimized through better education on understanding behavior as communication.
Chairman Brandt asked the Committee to consider overarching goals or considerations for the Report, as well as overlapping recommendations that may be consolidated, over the break.
Development and Review of Draft Statements and Recommendations for the 2017 Report to the President
Jack Martin Brandt, PCPID Chair
Amy S. Hewitt
Institute for Community Integration
University of Minnesota
Chairman Brandt explained that Ms. Hewitt would review the recommendations and find where the 16 recommendations can be combined to bring the Report to ten recommendations.
Ms. Pugh suggested overarching themes for the Report: the ability of people with DSPs to live in the community is tied to quality and stability of the DSP workforce. She also asked that the Report advise that any changes in Medicaid funding structure must prioritize and emphasize cost-effective community supports for people with disabilities.
Ms. Hewitt asked the Committee members to keep in mind that recommendations concerning Medicaid require states to take action. She encouraged the Committee not to tie the DSP workforce and people with disabilities getting jobs as a policy issue.
Ms. Hewitt reviewed the recommendations presented by the workgroups, and provided feedback. She emphasized the importance of ensuring that DSP career ladders remained within the field of providing direct services, and of making a ‘full court press’ to ensure that the needs of individuals with IDD can be met in all cases.
Ms. Hewitt expressed appreciation for the recommendation to incorporate DSPs into the WIOA conversation. DSPs are a high-growth industry, but thus far the Department of Labor has not created solutions for the DSP workforce. Mr. Tayloe added that the Bureau of Labor Statistics doesn’t track DSPs, and that doing so would be helpful.
Ms. Hewitt expressed concerns regarding the recommendation that individuals with IDD should be able to fill DSP roles. She cited a demonstration project on training individuals with IDD to be DSPs 10-15 years ago that faced challenges at multiple pilot sites with recruiting interested employees, and with those in training being able to meet the minimal requirements of a DSP or finding transportation to and from work.
Ms. Pugh responded that people with IDD serving as DSPs could serve as an entrée into the healthcare field for individuals with disabilities, who are often seen as the recipients of support rather than members of a workforce. She asked that the recommendation remain to revisit the demonstration, which is a bit old. Betty Williams, Citizen Member, added that friends of individuals with IDD, who may have intellectual or developmental disabilities themselves, can be the best DSPs and should be allowed to enter the DSP workforce.
Ms. Pugh argued that because immigrants compose a large portion of the current DSP workforce, the Report should discuss the education and employment concerns specific to immigrant employees working as DSPs. Ms. Yen expressed concerns that tying these issues together would create confusion. Mr. Tayloe said that although cultural competencies factored into discussions, the Committee would need more guidance to address the immigrant workforce. He also expressed concerns that discussions of immigrant workforce not undercut the ultimate objective of a stable DSP workforce.
Mr. Habib and Ms. Hewitt discussed the importance of clarifying the demographics of the DSP workforce in the report. Ms. Goode and Ms. Pugh pointed out that the demographics of the DSP workforce vary by geographic area. Ms. Goode also pointed out that immigrant workers are different from workers from diverse racial and ethnic backgrounds born in the United States.
Dan Habib asked what hurdles the self-directed model has and whether such a model has potential to expand the workforce or is just a practical model for individuals with IDD and their families. Ms. Hewitt discussed a report that will soon be published, revisiting a national study on take-up of self-directed services in IDD services. Self-directed services only make up 15-20% of overall services to people with IDD, but make up as much as 80% in some states. Self-directed services are more commonly used with non-developmental disabilities, and when used to provide services to individuals with IDD are often used by families.
Ms. Goode highlighted the importance of supporting families who provide direct support without creating the expectation that all families must do so. Ms. Hewitt agreed while some families can provide direct services, not all should be expected to.
Mr. Arias cautioned against a report that will frame people with IDD as people who must be taken care of, which would create a step back. He emphasized the importance of return to work.
Ms. Weintraub asked what changes would occur in the DSP landscape if Medicaid were repealed. Ms. Hewitt replied that even if Medicaid saw 25-30% cuts to community support for people with disabilities, the DSP workforce issues that the Report is meant to address will still exist.
Mr. Tayloe asked what latitude CMS has to play in rate methodology assessments and other approval processes over state plan. Ms. Hewitt replied that while CMS can create guidelines and policy in terms of the overall Medicaid program, it’s up to states to determine rates and staff qualifications. Melissa Harris, CMS, explained that CMS reviews the states’ processes from the lenses of access and managed care requirements. State flexibility is a key philosophy of the new leadership, but priorities are still being clarified.
Mr. Tayloe added that because CMS has recently taken more interest in rate methodologies there may be an opportunity to also look into compensation for DSPs. Mr. Williams replied that the case to invest in workforce should be made at the state, rather than federal level.
Ms. Pugh expressed concerns that unless robust guidance spells out the quality supports necessary for individuals with IDD, those supports may be forgotten by policymakers working on Medicaid. Ms. Harris replied that should PCPID make a recommendation that suggests CMS issues guidance, it should be laid out based on what is specifically necessary come from CMS.
Amy Cruz reviewed the recommendations from the working group as presented on a chart displayed at the meeting. The list created was made to convey intent, and the full recommendations will undergo wordsmithing before the report. Ms. Cruz scaled back the recommendations listed to the substantive recommendations, with 5 recommendations from each of the two workgroups listed in shorthand, then clarified by the Committee as follows:
- Engage WIOA’s broader workforce systems to develop the DSP workforce.
- Provide meaningful opportunities for job satisfaction and advancement.
- Equip and treat DSPs as community navigators.
- Avoid creating barriers to entry to DSP through extensive auditing and credentialing.
- Shift the focus on care from institutional to community-based.
- Federal credentialing standards for DSPs.
- Specialization and continued professional development opportunities.
- Continue and expand support for funding streams for family hiring.
- Expand self-directed model.
- Encourage career pathway partners such as community colleges and American Job Centers to invest in DSP specializations.
Ms. Pugh highlighted the importance of individuals with IDD as mentors and a part of quality training and development systems. She and Mr. Habib discussed the importance of cultural competencies, which should be a part of the credentialing recommendation.
Dan Habib, Citizen Member, asked the Committee whether a request for proposal (RFP) to create a national online database matching DSPs with individuals with intellectual and developmental disabilities should be added as a recommendation. Discussion followed of a similar model developed by California with a tiered system to ensure the correct DSPs were assigned based on need, and of the role of technology in ensuring quality community integration supports. Mr. Habib concluded that such a database could be mentioned in an existing recommendation rather than standing alone.
Ms. Pugh proposed a recommendation that any Medicaid funding structure must emphasize the quality, cost-effective provision of supports to ensure people with IDD lead active, healthy lives as contributors to their community; while monitoring data on where people with IDD are living to ensure progress. Ms. Weintraub and Mr. Thornton expressed support for the recommendation.
Mr. Arias and Mr. Tayloe highlighted the significance of cost-effective funding allocation, and thoroughly explaining how DSP work can prevent more expensive institutional settings.
Summary of Deliberations, Proceedings, and Closing Remarks
Jack Martin Brandt, PCPID Chair
Chairman Brandt asked for any further comments on the Report.
Mr. Habib emphasized the concept of the report as a ‘full court press’ to ensure that solutions to the DSP workforce crisis are pursued from all angles to prevent backslide. Mr. Arias highlighted the importance of making a strong statement about cost-effective funding allocation.
Chairman Brandt explained that the draft report will be circulated for voting electronically. There is a very good possibility that the Committee will hold a virtual meeting to discuss the draft report. Some members’ terms will expire on May 11; the Committee aims to vote before that time. The report is typically submitted in July or August, but the Committee aims to push the schedule forward.
Chairman Brandt thanked the Committee for their work and asked for a motion to adjourn. The motion was seconded by Ricardo Thornton and passed unanimously. The meeting was adjourned.