2014 Reinventing Quality Conference


2008 Reinventing Quality Conference
Conference Materials

Conference Program

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Opening Plenary

New Voices – Move Over for the Next Generation of Self Advocates
Youth and young adults are the future of self-advocacy. This generation of self advocates seeks community jobs; they’re not interested in wasting their lives away in traditional day programs. They want their own place to live; not a group home or some other “facility.” As one self-advocate bluntly put it, “Look, first off, we want to thank everyone who, over the years, helped to build the service system. Thank you. But here’s the thing. … a lot of what you built … we don’t want!” In this session, three self advocates share their vision of what future service systems should look like and what it’s going to take to get us there.
PDF Icon View/Download This Presentation Petty (2.24 MB)
Moderator:
Val Bradley; President, Human Services Research Institute (HSRI)
Presenters:
Michael Chapman; Director, Maryland Developmental Disabilities Administration
Jill Egle; The Arc of Northern Virginia
Rebecca Hare; NCLD, Youth Institute for Educational Leadership
Julie Petty; Human Services Research Institute (HSRI)

Breakout Session 1


Real Friends, Real Community Membership (People Who Need People)
Moving beyond physical inclusion to true social inclusion has been a challenge. Three people shared their successes at building real friendships and community membership. Angela Amado discussed strategies learned in her work in a variety of states. KFI in Maine has a long history of story-telling to shape transformation to new ways of thinking, new ways of listening, and new ways of providing support for people to have the lives they really want – real lives, homes of their own, competitive jobs, and real friends. Jim Meehan shared people’s stories to demonstrate KFI’s transformation from traditional, center-based services to a progressive community support provider by building community, one person at a time. Lee Kingham of Abilities Network in Maryland discussed the importance of building relationships between external and internal members of your organization’s community.
PDF Icon View/Download This Presentation Amado (8.0 MB)
PDF Icon View/Download This Presentation Meehan (1.96 MB)
Moderator/Presenter:
Angela Novak Amado; Research and Training Center on Community Living, University of Minnesota
Presenters:
Lee Kingham; Abilities Network
Jim Meehan; Katahdin Friends, Inc (KFI)

People Are Waiting – Responding to the Challenge of Providing People with Access to the Services They Need (Systems Change: From Vision to Implementation)
All across the United States individuals and families are being denied services that they need. Estimates range from 85,000 to more than 200,000 people waiting, with high levels of variability among states. People with developmental disabilities and their families are the victims of a national crisis – where is effective and equitable public policy? This session focused on nationally recognized, replicable efforts to respond to this crisis. Presenters spoke from practical experience about the importance of developing state systems that track people who need services, track urgency of need, and track people as they receive needed and desired supports. The session included discussions about waiting lists from an ADA and Olmstead perspective and as a civil rights issue. It included information about litigation and the role that advocates must play in demanding relief from waiting. This would include: moving at a reasonable pace, attending to people in institutions, and assuring that systematic "waiting list management" be integrated into state Olmstead plans. Specific state and national wait list campaigns were described, including the Pennsylvania Waiting List Campaign. The session also introduced the National Organization to End Waitlists (NOEWAIT), explaining its origins, mission, and commitment to both state and national mobilization to build effective alliances and advocacy movement within states and nationally to end wait lists and to provide for portability of services between and within states.
PDF Icon View/Download This Presentation Records (1.93 MB)
PDF Icon View/Download This Presentation Fox (4.48 MB)
PDF Icon View/Download This Presentation Feinstein (304 KB)
Moderator:
K. Charlie Lakin; Research and Training Center on Community Living, University of Minnesota
Presenters:
Maureen Devaney; Vision for Equality
Celia Feinstein; Associate Director, Institute on Disabilities, Temple University
Denver Fox; National Organization to End the Waiting Lists (NOEWAIT)
Tony Records; Tony Records and Associates, Inc. (TRA)

New Approaches to Employment – Shedding Old Models (Unfinished Business: Deconstructing Outmoded Models)
The move to include people in their communities through jobs and work opportunities has made little progress. In fact, the percentage of people receiving supports in inclusive settings has gone down between 1999 and 2004 and more than half of all expenditures for employment-related services remain in segregated, sheltered settings. Organizations have employed innovative approaches to including people with disabilities in real employment, some while dismantling segregated programs and others by inviting the community in to participate in a variety of opportunities that benefit all. The two organizations represented in this presentation, one in urban Philadelphia and the other in a rural community in Wisconsin, show it can be done in very different environments. New Horizons North is celebrating the 20th anniversary of closing their workshop and all facility-based services. They believe that integrated,
community-based employment has been the key to people with disabilities achieving rich and meaningful lives and has provided the proof that stigma and discrimination can become a thing of the past. For fourteen years, SPIN has used a connector model for people with disabilities, within a lifetime learning structure, to create balance in work, recreation, and continuous learning opportunities. They have established a gathering place that offers activities for everyone to connect to their community consistent with their own personal choices.
PDF Icon View/Download This Presentation Dotzman (1.77 MB)
Moderator:
Steve Eidelman; National Leadership Consortium on Developmental Disabilities, University of Delaware
Presenters:
Judy Dotzman; SPIN
Jennifer Felty; New Horizons North
Linda Jorgenson; New Horizons North
David Losinno; SPIN

Sharpening Expectations – New Directions in Quality at CMS (Improving Quality)
Anita Yuskauskas presented on current and future quality issues related to the Medicaid Waiver program including: trends in quality across Medicaid and challenges in the pursuit of quality relevant to the participant, the tax payer, quality of services, and qualities of life. Andrea Misenheimer (North Carolina) and Catriona Johnson (Maryland) described their State quality efforts in a 1915c Home and Community Based Services waiver program.
PDF Icon View/Download This Presentation Yuskauskas (1.5 MB)
PDF Icon View/Download This Presentation Johnson (233 KB)
PDF Icon View/Download This Presentation Misenheimer (1.05 MB)
Moderator:
Val Bradley; President, Human Services Research Institute (HSRI)
Presenters:
Catriona Johnson; Maryland Developmental Disabilities Administration
Andrea Misenheimer; DD Director Clinical Care Management, Piedmont Behavioral Healthcare, NC
Anita Yuskauskas; Centers for Medicare & Medicaid Services

Monday Lunch Session


John Agosta: It Can’t All be About Medicaid, Can It?
Demand is steadily increasing for developmental disability services. Meanwhile, states are having trouble finding the funding for additional services and are stuck with outdated service arrays that people increasingly don’t want. Going forward, the public sector cannot easily address the needs of all its citizens with disabilities. What can be done? Is it all really about Medicaid waivers? This session offered discussion on these circumstances and described promising responses where, in addition to services offered by public agencies, individuals learn to support one another and others, and people organize support offered by community serving organizations. The approach shows great potential for developing a sustainable, effective and efficient response to disability.
PDF Icon View/Download This Presentation Agosta (8.89 MB)
Moderator:
Nancy Thaler; NASDDDS
Presenters:
John Agosta; Vice President, Human Services Research Institute (HSRI)

Breakout Session 2


Exercising Your Political Muscles (Speaking Up/Speaking Out)
Self-advocates want to live lives of their own design in their own communities with the support they want and need. Sometimes it’s
not so easy to accomplish all this. Self-advocates face a number of challenges, including a lack of personal income, silly rules invented
by who-only-knows, and a service system that often serves people in old, out-dated ways. Self-advocates are working to change all this
and change often requires a political battle!
PDF Icon View/Download This Presentation Petty (6.27 MB)
Moderator:
Presenters:
Ken Capone; People on the Go
Jill Egle; The Arc of Northern Virginia
Rebecca Hare; NCLD, Youth Institute for Educational Leadership
Julie Petty; Human Services Research Institute (HSRI)
Betty Williams; The Arc of Indiana

Whose Life is it Anyway? Supporting Adults Living with Their Families (Unfinished Business: Deconstructing Outmoded Models)
Empty nesters whose children come home to live, discover the challenge of having adults who think for themselves living at home. On the flip side, adult children who move in with their parents, even temporarily, likely find that living back home means not always being able to do what they please. Such arrangements require negotiation, give and take, and lots of effort to see the other person’s point of view. It’s no different when the adult living at home has disabilities. Families are challenged to help their sons and daughters become adults with separate identities even as they provide care and support. How can family members and support agencies help people to live at home while still having autonomy and lives of their own? The formal service system has a role to play by providing the kind of support adults and families need to make it work for everyone.
PDF Icon View/Download This Presentation Poetz (5 KB)
PDF Icon View/Download This Presentation Taub (635 KB)
Moderator:
Nancy Thaler; NASDDDS
Presenters:
Liz Healey; PEAL Center
Cliff Poetz; Research and Training Center on Community Living, University of Minnesota
Sue Swenson; Doxa, Inc.
Sarah Taub; Project Director, Human Services Research Institute (HSRI)

Quality Management – States and Providers Using Data and Ensuring Reliability (Improving Quality)
This session presented results and implications from a validity assessment of the South Carolina Department of Disabilities and
Special Needs Quality Assessment/Quality Improvement system in the context of the CMS Quality Framework. An overview of the
methods, findings, and implications for statewide assessment of quality of supports for people with intellectual and developmental
disabilities was included. The use of the National Core Indicator data with information to assess service quality, track performance
and improve outcomes, was discussed.
PDF Icon View/Download This Presentation Rotholz (845 KB)
Moderator/Presenter:
Chas Moseley; Director of Special Projects, National Association of State Directors of Developmental Disabilities Services (NASDDDS)
Presenters:
Janet George; Policy, Planning, and Children’s Services, Massachusetts DMR
Kathi Lacy; Associate State Director, South Carolina Department of Disabilities & Special Needs
David Rotholz; Project Director, Clinical Associate Professor, Center for Disability Resources, University of South Carolina

Breakout Session 3


Personal Relationships and Trusting Communities – Social Capital as a Long Lasting Quality Improvement Strategy (Speaking Up/Speaking Out)
How can we lead organizations to initiate long-term concrete quality improvement strategies? How do we make the transition from data
analysis and compliance-based quality assurance to long term changes in leadership behavior and organization development? Social
Capital indicates that fundamental change can be based on building trust, reciprocity, and personal networks within communities. Social
Capital provides quality management initiatives with energizing and evidence based quality improvement strategies and indicators.
PDF Icon View/Download This Presentation Hammis (2.82 MB)
Moderator/Presenter:
Jim Gardner, PhD; President & CEO, Council for Quality and Leadership
Presenters:
David Hammis; Griffin-Hammis Associates

Expanding Employment Opportunities – How to Develop a New "Work" Ethic (Expanding Individualized Supports)
Why are so many working age adults with intellectual and developmental disabilities not working for local employers earning competitive wages and building careers? Did we forget what we learned during from the supported employment initiatives of the late ‘80s early ‘90s? John Butterworth and members of the State Employment Leadership Network (SELN) addressed lessons learned in implementing state level strategy and policy to expand integrated employment opportunities. A framework for employment was presented and member states from the SELN, a collaborative partnership committed to employment growth, discussed their experiences.
PDF Icon View/Download This Presentation Butterworth (775 KB)
PDF Icon View/Download This Presentation Gauruder (529 KB)
PDF Icon View/Download This Presentation Bradley (7.64 MB)
PDF Icon View/Download This Presentation Olsen (8 KB)
Moderator:
Rie Kennedy-Lizotte; Program Director Provider Development, The National Association of State Directors of Developmental Disabilities Services (NASDDDS)
Presenters:
Val Bradley; President, Human Services Research Institute (HSRI)
John Butterworth; Research Coordinator, Institute for Community Inclusion, University of Massachusetts Boston
Colleen Gauruder; Maryland Developmental Disabilities Administration
Kathi Lacy; Associate State Director, South Carolina Department of Disabilities & Special Needs
Dana Olsen; director of quality improvement initiatives, PA Office of Developmental Programs

Innovative Funding and Support Mechanisms (Systems Change: From Vision to Implementation)
This session presented two innovative approaches to funding. Human Services Co-operatives provide a platform that bring people together to self-direct their services in partnership with their community, professionals, and funding entities. Arizona now has three local cooperatives owned and controlled by individuals and families who coordinate support services through their local co-op. The model is also being introduced in California, Tennessee, Michigan, and Illinois. The second approach presented was Individual Development Accounts (IDAs) which are matched savings accounts that allow low income American families to save and build assets. Earnings can be accrued toward such asset goals as buying a home, starting a business, or getting job training, and funds will be matched by the IDA program.
PDF Icon View/Download This Presentation Agosta (5.07 MB)
Moderator:
Sarah Taub; Project Director, Human Services Research Institute (HSRI)
Presenters:
John Agosta; Vice President, Human Services Research Institute (HSRI)
Gale Bohling; Federated Human Services Cooperatives
Barbara Brent; AZ Division of Developmental Disabilities
Teresa Moore; Federated Human Services Cooperatives

Tuesday Breakfast Roundtables


Putting an End to Wait Lists and Unfair Practices
A lively discussion about ending wait lists and the importance of providing portability within and between states. Have you ever thought about this … there are families who have been on the wait list in their state for ten years, move to another state and have to start again at the bottom of the list. This sometimes occurs even moving to a new county! It’s time to stop this senselessness and provide quality supports to people who need and want them in a way that is fair and responsible!
PDF Icon View/Download This Presentation Stasko (186 KB)
Moderator/Presenter:
Maureen Devaney; Vision for Equality
Denver Fox; National Organization to End the Waiting Lists (NOEWAIT)
Sheila Stasko; PA Waiting List Campaign

Breakout Session 4


Love & Marriage (People Who Need People)
As a field, we have been increasingly successful in maintaining people in their homes, including them in communities and, in some
instances, finding them meaningful jobs. We have been less successful in supporting people with developmental disabilities in lasting
and loving relationships. This panel featured people who have found love, married, and established homes. The presenters talked
about the challenges they faced, the supports they received, and the everyday issues they face as part of a couple.
PDF Icon View/Download This Presentation Fields (6.18 MB)
PDF Icon View/Download This Presentation Weintraub (590 KB)
Moderator/Presenter:
Liz Weintraub; The Council on Quality and Leadership
Presenters:
Sid Blanchard; Community Access Unlimited
Vailene Fields; Community Access Unlimited
Pamela Kelly-Fields; Community Access Unlimited
Larry Marcus; Community Access Unlimited
Kathy Marcus; Community Access Unlimited
Larry Marcus; Community Access Unlimited

OK, But How Do You Make Individualized Supports Work Financially? (Expanding Individualized Supports)
Are you on the road toward providing individualized supports but wondering how you will face the challenge of individual budgets and make the funding all work out in the end? Are individualized supports really less expensive than congregate supports – and are costs reduced over time as people develop more natural supports and relationships? Attendees heard from two of the country's most creative providers in making it work financially. Paul Saulino and Pat Fratangelo shared some of the strategies they use.
PDF Icon View/Download This Presentation Saulino (18 KB)
Moderator:
Sarah Taub; Project Director, Human Services Research Institute (HSRI)
Presenters:
Pat Fratangelo; Onondaga Community Living
Paul Saulino; Values Into Action

Moving Mountain Award Winners: Finding and Keeping a Diverse, Quality Direct Support Workforce (Systems Change: From Vision to Implementation)
Does your organization or state struggle to find, choose, train and keep qualified direct support professionals? In this session organizations that have demonstrated best practice in direct support workforce development will share their creative approaches and stories of their success. Camille Tapper will speak about best practices in professionalizing a multicultural direct support workforce. Sean Delaney will show his video, “Open Your Eyes." This song/video is Sean’s plea to his peers to become more aware of the value of being a Direct Support Professional. It has received almost 300,000 hits on YouTube. Hear from the 2008 Moving Mountains award winners in this session!
PDF Icon View/Download This Presentation Tapper (7.62 MB)
PDF Icon View/Download This Presentation Hardiman (2.2 MB)
Moderator:
Sheryl Larson; Research Director, University of Minnesota Institute on Community Integration
Presenters:
Sean Delaney; Special Needs Programs
Ann Hardiman; NY State Assoc. of Community and Residential Services
Joseph Macbeth; NY State Assoc. of Community and Residential Services
Tom McAlvanah; Lifespire
Camille Tapper; Miami Cerebral Palsy Residential Services, Inc

Shared Living – A Creative Approach to Supporting People in Their Own Homes (Unfinished Business: Deconstructing Outmoded Models)
The presenters discussed the unique process and exploration that takes place when individuals share their lives with others as roommates, live-in caregivers, and through shared living arrangements. Attendees learned about this creative approach to self-directed supports – one in which people live in their own homes with people they choose in arrangements that work very well for many people over the long term.
PDF Icon View/Download This Presentation Pelletier (2.57 MB)
Moderator:
Chas Moseley; Director of Special Projects, National Association of State Directors of Developmental Disabilities Services (NASDDDS)
Presenters:
Sandy Pelletier; Gateways Community Services
Patti Scott; Chief Executive Officer (CEO), Neighbours, Inc

Of the People, By the People and For the People – Grass Roots Quality Improvement (Improving Quality)
Quality improvement efforts should always keep individuals with developmental disabilities and their families as the central focus. This session described initiatives in two states – Pennsylvania and Maryland – that measure valued outcomes and that involve people with disabilities in the process of collecting information. Both of these quality processes have a long history and presenters will offer a road map to replicating grass roots quality improvement and best practices in training and involving people with disabilities and their families in defining and measuring quality.
PDF Icon View/Download This Presentation Feinstein (2.03 MB)
PDF Icon View/Download This Presentation Olsen (17 KB)
PDF Icon View/Download This Presentation Romano (891 KB)
Moderator:
Val Bradley; President, Human Services Research Institute (HSRI)
Presenters:
Audrey Coccia; Vision for Equality
Celia Feinstein; Associate Director, Institute on Disabilities, Temple University
Vicki Mills; Ask Me - The Arc of Maryland
Dana Olsen; director of quality improvement initiatives, PA Office of Developmental Programs
Crystal Stephens; Ask Me - The Arc of Maryland

Breakout Session 5


Reaching Self-Advocates in the Virtual World – Using the Internet to Communicate (Speaking Up/Speaking Out)
Self-advocates are increasingly using the internet to share information and organize for change. This session examined two such efforts: The Riot is a quarterly e-newsletter that is helping to bring self-advocates together in the United States and beyond. The Riot’s success helped spawn a new company called “Riot Works.” Riot Works seeks to generate opportunity for self-advocates across the nation to make money and lead healthier lives. Self-Advocacy Online (SAO) is a new educational and networking website for organizations and individuals engaged in self-advocacy. SAO’s Learning Center helps build skills in self-advocacy. The interactive national self-advocacy map can help self-advocates find chapters in their community or connect with other groups across the country working on similar issues. The build-a-website component of SAO supports self-advocacy organizations to develop their own well-designed, accessible,
and information-rich websites. The NEC Foundation supported research on the essential characteristics of SAO's design. The MacArthur Foundation is funding the development and implementation of the program.
PDF Icon View/Download This Presentation Petty (6.53 MB)
Moderator:
K. Charlie Lakin; Research and Training Center on Community Living, University of Minnesota
Presenters:
Shawn Lawler; Research and Training Center on Community Living, University of Minnesota
Julie Petty; Human Services Research Institute (HSRI)
Jerry Smith; Research and Training Center on Community Living, University of Minnesota
John Westerman; Web Developer, Research and Training Center on Community Living, University of Minnesota
Betty Williams; The Arc of Indiana

Closing Public Institutions – the Clock Keeps Ticking (Unfinished Business: Deconstructing Outmoded Models)
Closing institutions is about multiple domains operating simultaneously: politics; the real lives of people (many of whom have been there for a long time); their families; the local community where the institution is located; keeping certification and funding; working with the provider community; managing the media; and working with the Governor, legislature, and advocates. While the rate of institutional depopulation has declined since the introduction of the New Freedom Initiative, it remains possible and important to close facilities. Both presenters have significant and recent experience with institutional closure. Indiana is the most recent state to close institutions for people with developmental disabilities. Illinois is examining the possibilities in light of de-certifications and litigation. With over 40,000 people still in public institutions across the country, the work to close them is far from over. Attendees heard from two speakers with significant experience about the importance and complex challenges of this effort.
PDF Icon View/Download This Presentation Eidelman (450 KB)
PDF Icon View/Download This Presentation Romano (1.71 MB)
Moderator/Presenter:
Steve Eidelman; National Leadership Consortium on Developmental Disabilities, University of Delaware
Presenters:
Peter Bisbecos; Indiana Division of Disability and Rehabilitative Services
Sheila Romano; Illinois Council on Developmental Disabilities