For the past 20 years, the Reinventing Quality Conference, hosted by the Research and Training Center on Community Living and the Human Services Research Institute, has taken place to distribute and examine the best practices and future directions of individualized, person-centered supports as it relates to quality assurance. This year’s conference, held in Baltimore, Maryland on August 5th-7th, 2012, was the New American Movement for People with Disabilities first appearance at a conference as we managed an exhibit table with our promotional materials and information regarding our movement. The first break out session that the NAM team attended was titled, “Building Real Communities” presented by Eric Jacobson and Caitlin Childs from the Georgia Council on Developmental Disabilities; Joe Erpenbeck from ABCD Cincinnati Coordinator; De’Amon Harges from Broadway United Methodist Church and lastly, Anne Mitchell from Tesserae Learning. The purpose of this workshop was to learn how to utilize the gifts of individuals, while thinking outside the box. This is implemented through a statement of our intentions to a group of people as a means to understand the message each person is trying to convey with the suspension of judgment.
Initially, the presenters asked everyone in the room to watch a movie regarding the treatment of people with disabilities. After the movie was over, we were directed to break into small groups and participate in a “World Café” conversation to ensure each person had a chance to speak without being interrupted. The questions asked during this conversation were: 1) what’s important to you about this situation and why do you care? 2) What assumptions do we need to test or challenge in thinking about this? 3) What gifts might we uncover today that could make the most difference in our home community? The NAM team truly enjoyed this presentation and took away some great strategies that we plan to utilize within our own movement and other self-advocacy groups that we are affiliated with. Furthermore, we have contacted the presenters of this workshop to help us plan a “Self-Advocacy Day” here at Community Access Unlimited for spring 2013, which will be geared towards identified leaders in the community.
For the second breakout session, NAM spilt up to attend different workshops as a means to compare ideas and share knowledge gained from each session. Kirsten Schenk and Sid Katz attended “Leadership Roles and Person-Centered Thinking Coaches”, presented by Mary Lou Bourne and Michael Smull from Support Development Associates; David Meadows, Barry Seaver and Kathy Witt from VA Department of Behavioral Health and Disability Services; and Jo Viars from Mount Rogers Community Services Board. This session discussed how leaders and support teams can build the ability to change the culture in an organization that serves people with intellectual/developmental disabilities. The breakout focused on the need for attention to detail when creating a person-centered planning support plan. With a particular focus on special education, this breakout demonstrated a logistical approach to creating and executing a person-centered plan. The biggest take-away, however, was the concept that person-centered planning has to be an agreed upon attitude shift in the organization to have true, implemented success.
During this time, Gillian attended, “2010 Moving Mountains: Best Practices in Direct Support Workforce”, presented by two Moving Mountains award winners, Jennifer Cottingham and Trish Walter from Mat-Su Services for Children and Adults; and Kris Foss from Ability Beyond Disability. This session focused on strategies that these two organizations employed to revamp their direct support workforce after studying a variety of factors that affect performance and retention rate. Ability Beyond Disability ran a study in 2007 to 2008 that discovered a 35% turnover rate among their direct support staff. With this alarming percentage, the organization strategized how to change the following: work environment, benefits and compensation. Evidently, Ability Beyond Disability created a training program called, “Pathways to Excellence” which seeks to engage employees, promote empowerment, re-energize passion, link career paths with the organization’s mission, and allocate merit increases based on performance. The training program began in 2008, shortly after their initial study concluded, and was characterized by a self-selection application process which produced 20-25 people in each class, a 5 month program that included orientation, a monthly one hour discussion, writing, lesson component, 160 hours of online classes through the College of Direct Support and a graduation ceremony which distributed a certificate, a promotion/wage or salary increase if warranted and a completion bonus. Since May 2008, there have been 221 graduates through Pathways to Excellence along with an annual retention rate of 94% among graduates. Within the entire direct support workforce of Ability Beyond Disability, the turnover rate has decreased to 17% from their baseline of 30%. Moreover, HR costs have decreased through this program. Nonetheless, Ability Beyond Disability is pleased to have implemented such an effective program that allows staff to improve their quality of performance and cherish their jobs.
Mat-Su Services for Children and Adults developed a similar program to that of Pathways for Excellence as they utilized the NADSP/CDS Credentialing Pilot Project after examining their recruitment and retention rates through the results of The Alaska DSP Workforce Initiative for Community Human Service Organizations in July 2007. The NADSP/CDS Credentialing Pilot Project was chosen to enhance the direct support workforce as Mat-Su felt this program correlated to their core values. Through this credentialing project, Mat-Su’s direct support employees have become DSP-Registered and DSP-Certified. This is executed through workshops, one-on-one mentoring for portfolio work sample development, and completing 160 hours of College of Direct Support online classes. Mat-Su found that graduates of NADSP/CDS Credentialing Pilot Project have a varying level of skills and motivation, and that it is beneficial for all employees who complete this intensive training as members saw a difference as it relates to time and demands.
The third breakout session that Gillian attended was, “Building A Person Centered System: The Importance of Alignment”, presented by Parthy Dinora from Virginia Commonwealth University; Laura Doutre from Tennessee Department of Intellectual and Developmental Disabilities; Mary Lee Fay from Oregon Department of Human Services, Developmental Disability Services; and Michael Smull from Support Development Associates. This session focused on how to effectively transition people with disabilities from service life to community life by utilizing person centered practices. Each state spoke of their experiences with this transition as a means to facilitate a full systems change for the disability community. In Virginia, there was difficulty moving towards person-centered practices for individuals with disabilities due to the crash of the economy impacting the budget, creating an inability to implement a new systems change. Furthermore, policy change is generally slow during times of economic upheaval as there many safeguards to overcome. Once the crisis was reduced to an acceptable level, the Virginia Commonwealth University was funded by the Centers for Medicare and Medicaid services, to execute the Rebalancing Initiative. Ultimately, this program works to expand and direct the types of tools and resources available to individuals with disabilities so they are able to make informed decisions over their supports and services. The program also provides resources for those who are transition from state institutions into the community. Since emphasis of this program’ endeavors are based on personal choice, self-advocates involvement has been integral to success.
Oregon practiced similar methods as they sought to bring person-centered thinking into play for community members in the system. Their framework was based on eliminating the staff-shift models as it is not useful for building meaningful relationships in the community. Oregon found that family to family networks for individuals in the system was the best way to ensure that networks and relationships in the community are maintained. Evidently, this became the foundation of Oregon’s budget and values as it pertains to community based care of individuals with disabilities. Originally, Tennessee’s budget focused on health and safety until a budget crisis caused them to reevaluate their system for supports and services. Tennessee found it necessary to immerse state staff in person-centered thinking to get on board, which caused them to rewrite their waiver requirements so it was aligned with person-centered planning. Like Virginia, they recognized the importance of working with self-advocates as it helped them established a statewide leadership committee for their initiatives. Lastly, Support Development Associates, located in Annapolis, Maryland, explained that many states do not have the values of person-centered planning implemented in their systems because they place too much emphasis on documentation. As a result, this put the practice of person-centered planning on the backburner for many provider organizations. As a means to provide advice for states and organizations to shift to a person centered paradigm, SDA distributed and explained the contents of their worksheet, titled, “Moving the DD System towards Capabilities and Support”. Essentially, it provides tips relating to the underlying assumption of services and support for people with disabilities, intake, assessment, planning, monitoring, financial structure and quality management.
Likewise, the third breakout session that Kirsten attended with Sidney Katz was entitled “Using Research Data to Build and Implement Effective Public Policy” and focused on the ways in which data effects policy change. For NAMPWD, this was one of the strongest breakouts because it has confirmed the shift in direct-care attitudes towards community living with fiscal data to support the effort. Combining research from states such as North Carolina and North Dakota, the presenters, Amy Hewitt from University of Minnesota, Research and Training Center on Community Living, Chas Moseley from NASDDDS, and Kathy Sheppard-Jones from the University of Kentucky, were adamant that community living was both more fiscally responsible and yielded higher levels of happiness amongst service recipients. That being said, the breakout was not to demonstrate the success of community living as much as it was used to demonstrate the ways in which data can and will affect public policy. In a similar manner to the way in which the World Health Organization and the United Nations uses national statistics to create and modify policy, this break out showed how policy can be used on a much smaller level. In fact, because this data is a direct sample of the affected populations, it accurately articulates the needs of those being served. Data, for the researchers is a tangible and reasonable way to serve communities effectively. However, NAMPWD recognizes that the search for greater accuracy in policy – through the collection of data – demands financial sponsorship. The presenters suggested partnering with local universities and undergraduate students to form an educational symbiosis between the community, students and policy-makers. The community gains effective policy, the students experience and the policy-makers build constituents through their local responsiveness. This relationship could not only change small towns, but link communities through new and effective policy.
The NAM team reconvened for the fourth breakout session, titled, “Allies in Self-Advocacy – What does it take?” presented by Ken Capone from People on the Go, and Liz Weintraub and Dawn Rudolph from AUCD. This presentation focused on what was learned from the 2011 Summit, Envisioning the Future: Allies in Self-Advocacy. This is a national initiative, sponsored by the AIDD, is comprised of a series of 9 summits that engages self-advocates directly in informing state and federal support, policy and funding. The purpose of this initiative is to share what is happening in terms of structure, activities, accomplishments and challenges, to plan steps to strengthen and enhance current policy, develop recommendations for action and lastly to develop policy recommendations. Through this process, the summit concluded upon the following recommendations for future action: 1) to provide support to strengthen self-advocacy 2) provide support through national DD network associations 3) promote inclusion and self-advocacy at the federal level 4) educate people about disability and self-advocacy and lastly 5) work with other federal agencies on issues. Furthermore, the following recommendations were made as it relates to policy: 1) add self-advocacy information as a key part of legislation 2) require DD networks to strengthen self-advocacy 3) require UCEDD’s and P&A’s direct support 4) require DD councils to recruit young self-advocates 5) promote inclusion of Self-Advocacy 6) Write regulations in the DD Act reauthorization to promote self-advocacy. While these recommendations are quite clear to the disability community and self-advocacy groups, some issues still remain such as providing funding for independent self-advocacy endeavors and how to properly train and retain advisors for self-advocacy organizations.
The last breakout session of the conference, titled, “Key Issues in Self-Advocacy Organizations” invited notable self-advocates and advisors from around the country to speak on behalf of the organizations they represent as it relates to their goals, working with other self-advocacy groups to achieve common goals, self-advocacy advisors, and receiving the necessary supports to function. The invited guests were Barbara Coppens from The Arc National Council of Self-Advocates; Amy Doherty from National Youth Leadership Network; Teresa Moore from People First of Arizona; and lastly, Ricardo Thornton of Project ACTION. Each guest provided a plethora of useful information that is meant to serve as advice and tips for other self-advocacy organizations and advisors just getting on their feet or seasoned in the field.
As stated in the beginning, NAM felt that the most enjoyable and useful breakout session attended by its team was “Building Real Communities” as it provided a lesson to utilize when recruiting and retaining new leaders in the disability community through our movement. Gary Rubin stated that he enjoyed exchanging ideas and experiences with the people he met and is excited to see this type of workshop recreated at CAU in the future. Likewise, Sidney Katz agreed as he appreciated the degree of involvement encouraged in this session. Ultimately, Sidney and Gary are eager to share the information learned from each session in the community as it is important for self-advocates to learn of the efforts across the United States to better the lives of people with disabilities. Through the spread of knowledge, NAM expands its capacity to mobilize new leaders.