2016 Directors Forum & Mid-Year Conference

2016 Directors Forum & Mid-Year Conference

Reframing Policies and Practices to Support Families

June 8 – 10, 2016
The Westin Kansas City of Crown Center
Kansas City, Missouri


Reframing Policies and Practices to Support Families.
As states are faced with striving to redesign their systems to meet the new federal home and community-based services (HCBS) requirements, they are becoming increasingly aware of the impact supporting families has on their systems. Families are the core unit in our society, serving as a source of support for all its members. For people with intellectual and developmental disabilities (I/DD) the role of family is unique, and often central in the support and care provided across the lifespan. Family members play key roles in identifying and securing opportunities for their family members to participate within their community in meaningful ways and ensuring access to self-determined lives. According to recent national data, more than 75 percent of the 4.7 million people with an intellectual or developmental disability live with their families.

States have learned that when families are assisted to support their family members, a full community experience for their loved one with I/DD can be achieved.  Come learn from federal and state partners about initiatives that are strengthening national and state policies and practices and resulting in improved supports to families within local communities.

The conference will provide opportunities to:

  • Hear from federal leaders about initiatives that support families.
  • Learn how supporting families leads to better outcomes for the people they support.
  • Learn the latest information on trends in long-term services and supports (LTSS), and family caregiving. 
  • Listen and learn from state leaders on their experiences with these topics.


Michelle Reynolds, Ph.D.
Director of Individual Advocacy and Family Support for the University of Missouri-Kansas City Institute for Human Development (UMKC-IHD) University Center on Excellence in Developmental Disabilities (UCEDD).

Michelle ReynoldsDr. Reynolds' passion, knowledge, and experience come from growing up as a sibling of a brother with developmental disabilities and has worked at the UMKC-IHD for more than 17 years. In this role she is responsible for projects that directly impact the lives of persons with disabilities and their families such as the Health Resources and Services Administration (HRSA) Family-to-Family Health Information Center for Missouri, Parent-to-Parent program housed within the Missouri Developmental Disability Resource Center, and HRSA Integrated Community Services and Innovative Models grant initiatives. Additionally, she recently transitioned from a role providing direct support to People First of Missouri and Self-Advocates Becoming Empowered, the state and national self-advocacy movement for adults with developmental disabilities, to focusing on policy and systems change at the national and state level centering on supports for families with family members with intellectual and developmental disabilities.

Her work focuses on transformation of state systems, such as developmental disability, early childhood, and special health care needs to focus on person- and family-centered outcomes. In May 2014 she was appointed to the President's Committee for People with Intellectual Disabilities. Ms. Reynolds will talk about the Community of Practice for Supporting Families of Individuals with Intellectual & Developmental Disabilities that involves six states working to develop systems of support for families throughout the lifespan of their family member with intellectual and developmental disabilities.

James Toews
Principal Deputy Administrator for the U.S. Department of Health and Human Services, Administration for Community Living.

James ToewsFor 27 years, James worked in the Oregon Department of Human Services administering several of its systems for long-term services and support (LTSS). His division had responsibility and oversight for all LTSS services including community residential care, assisted living, adult foster care, in-home care, employment programs, nursing homes, family support, Older Americans Act services, and others. During his tenure, Oregon continued its dramatic reduction in reliance on institutional care models and development of a wide-network of home and community-based services.

In November 2011 he joined the U.S. Department of Health and Human Services Office on Disabilities as a senior policy analyst and in April 2012 became a senior advisor in the newly created Administration for Community Living within HHS. James is now the principal deputy administrator and is also on loan to the Centers for Medicare & Medicaid Services (CMS). James will speak about his experience assisting in the implementation of the new home and community-based settings regulations.

Michael Remus
Director of Special Education for Deer Valley Unified School District

Michael RemusMichael has a passion for inclusive education. As Director of Student Services in Williamson County, Tennessee, he eliminated segregated special education classes. Michael is currently Director of Special Education for Deer Valley USD in Phoenix, Arizona, where he is working to eliminate segregated schools and classes. He also consults with other school districts and provides individual assistance and training to parents and educators on special education issues. Michael will talk about his experiences setting early expectations with families and how working with partner agencies focusing on a student's trajectory will result in better outcomes.


Conference Program

2016 MYC Program Cover

Directors Forum
Wednesday, June 8
(8:30 AM - 4:30 PM)

Conference Sessions
Thursday, June 9
(8:30 AM - 5:00 PM)

Conference Sessions
Friday, June 10
(8:30 AM - 12:30 PM)


Thursday, June 9, 2016


Inclusive Practices-For Entire Life, Not Just for School Years
REMUS.pdf (2MB)

Michael Remus
Director of Student Support Services for the Sedona School District, Arizona

Mr. Remus spoke about the changes schools are investing in to be more inclusive. He focused specifically on the barriers that are presented to schools and what they are initiating to overcome these barriers so students are prepared for an inclusive adult life. Mr. Remus provided examples of how we can all work together to make sure every person's life is inclusive and that everyone who supports them has high expectations.


Using Life Course Tools

Sheli Reynolds, Ph.D.
Director of Individual Advocacy and Family Support
University of Kansas City Missouri, Institute for Human Development, University Center on Excellence in Developmental Disabilities

Ms. Reynolds introduced the LifeCourse Framework and how it provides the foundation for the Community of Practice (CoP) for Supporting Families Across the Lifespan. The CoP currently involves six states working to develop systems of support for families throughout the lifespan of their family member with intellectual and developmental disabilities (I/DD) and is expanding to 12 new states.

Ben St. John

Ben is a well-known and valued member of his community. He is a member of the Excelsior Springs Fire Department and assists the Tiger football team at his high school alma mater. Ben shared his GOOD LIFE through the lens of the LifeCourse.


Systems Design through the LifeCourse and Person-Centered Thinking
COLE.pdf (4MB)

Joan Christopher
Research Instructor / Advocacy
Self-Determination Coordinator

Erin Leveton
D.C. Department on Disability Services

Rhonda White
Resource Specialist
Quality Trust for People with Disabilities

The District of Columbia (D.C.) has been working to transform its home and community-based services (HCBS) system to include an extensive emphasis on person-centered thinking and, within that transformation, blending the LifeCourse and Community of Practice for Supporting Families into action. Members of the D.C. Community of Practice team shared their experience with infusing the LifeCourse framework and tools into these systems change efforts, and reflect on the way this touches families, people with disabilities and professionals.

Molly Cole
Connecticut Council on Developmental Disabilities

Ms. Cole shared Connecticut's expertise on how to best build consensus and understanding with support coordinators and others on how to use different person-centered planning and LifeCourse tools with individuals and families according to their individual needs and life situations. Specifically, she covered the opportunities, difficulties and what has worked when it comes to helping others appreciate that the LifeCourse framework is not an "add-on," but rather a complement to supporting people at different life stages.


Partnering for Family and Community Engagement

The Supporting Families Community of Practice (CoP) has developed a universal strategy for providing information, outreach and supports based on the knowledge that approximately 75 percent of people with developmental disabilities are not part of the formal service system and the LifeCourse framework is of value to all people; the 25 percent and the 75 percent. Each person benefits from the framework, employing unique strategies, information, policies, practices and community engagement with both the formal and informal systems. Leaders from Tennessee, Washington, and Pennsylvania teamed up to illustrate how they have implemented different pieces of the universal strategy.

Nancy Thaler
Deputy Secretary
Pennsylvania Office of Developmental Programs

Nancy Richey
Family Policy Specialist
Pennsylvania Office of Developmental Programs

Ms. Thaler and Ms. Richey described the importance of engaging families in any strategic planning process from the ground up and through a state's system redesign, including launching and embedding sustainable family networks.

Emma Shouse
Director of Communications
Tennessee Council on Developmental Disabilities

Courtney Kelly
Assistant Commissioner
Accreditation and Person-Centered Planning
Tennessee Department of Intellectual & Developmental Disabilities

Ms. Shouse and Ms. Kelly shared their experiences in how they developed resource folders to assist families in navigating the complexities of the service system. They also described their lunch and learn sessions, and how they engage in non-traditional outreach.

Jamie Coonts
Program Director
Arc of Snohomish County

Betsy McAlister
Washington Family Policy Specialist

Ms. Coonts and Ms. McAlister highlighted Washington's mylifeplan.guide, a new person-centered online tool for everyone to use, whether they are connected to the formal service system or not. They also shared how the tool is now working in concert with the state developmental disabilities agency to foster seamless planning.


Supporting Families as an Essential Component of Medicaid Funded Supports and Services
HUHN-GOTTO.pdf (1.5MB)

Patti Killingsworth
Assistant Commissioner / Chief of Long Term Services and Supports
Tennessee Bureau of TennCare

Ms. Killingsworth discussed the outreach efforts and targeted strategies identified and implemented to solicit family and individual input to ensure supports to families are a key component of service provision in the expansion of the 1115 managed care waiver to provide home and community-based services and supports to people with developmental disabilities.

Evelyn Perez
Assistant Secretary
Developmental Disabilities Administration
Washington State Department of Social and Health Services

Shannon Manion
Chief, Office of Compliance, Monitoring, and Training
Developmental Disabilities Administration
Washington State Department of Social and Health Services

Ms. Perez and Ms. Manion presented Washington's experience with how they worked with their community to develop and implement strategies for the Community First Choice State Plan Amendment (1915(k)) rolling out in their state. They discussed how the 1915(k) will provide opportunities for new people to receive services and supports with the Community of Practice and LifeCourse Framework in mind.

Valerie Huhn
Director of Division of Developmental Disabilities
Missouri Department of Mental Health

Ms. Huhn discussed the importance of the Missouri Governor’s Partnership for Hope 1915(c) waiver program and explain from the state’s perspective, what kind of information the state hoped to gain from the research evaluation.
George Gotto
Director of Community Services,
Institute for Human Development, UMKC

Dr. Gotto discussed the recent research results from the 2010 implementation of the Missouri Partnership for Hope 1915(c) waiver, which provides a capped benefit to individuals who live primarily in a family setting. George shared research results on how the waiver has helped families that are not able to meet all the needs of their loved ones and are providing significant support to their family members.


Planning, Data, and Quality Assurance for Quality Outcomes in Supporting Families
LUSK.pdf (1.5MB)
BONARDI.pdf (1.5MB)

This presentation, composed of leaders from South Dakota, Missouri, and the National Core Indicators projects, highlighted using data and information to support families.

Dan Lusk
Division of Developmental Disabilities
South Dakota Department of Human Services

Mr. Lusk talked about how South Dakota is realigning the Individual Support Plan around the LifeCourse domains and developing measurements as part of this initiative.

Kyla Mundwiller
Director of Self-Determination
Missouri Division of Developmental Disabilities

Shelly Brown
Mental Health Manager
Division of Developmental Disabilities
Missouri Department of Mental Health

Lisa Nothaus
Statewide Family Support Coordinator
Division of Developmental Disabilities
Missouri Department of Mental Health

Members from Missouri's Community of Practice team shared the multiple initiatives that have taken place in Missouri to increase quality through the LifeCourse Framework and how supports to individuals and families have changed as a result. They described their experiences with enhancing supports to individuals and families and overhauling the agency's front door by using the LifeCourse and revising the Individual Support Plan using LifeCourse tools. One of the most significant changes the state DD agency made was lining up their Quality Outcomes with the life domains from the LifeCourse framework.

Alixe Bonardi
NCI Project Director
Human Services Research Institute (HSRI)

Ms. Bonardi presented data from the National Core Indicators (NCI) survey showing available trends about what NCI data tells us about supports and outcomes for families. She covered outcomes for access to services, satisfaction, and community participation, with an examination by demographic characteristics of the respondents and service recipients.

Friday, June 10, 2016


Advancing Community Integration through Families

James Toews
Acting Principal Deputy Administrator
U.S. Department of Health and Human Services
Administration for Community Living

Mr. Toews spoke about his experience assisting in the implementation of the new home and community-based settings regulations and how the regulations impact people with I/DD receiving Medicaid-funding supports living in the family home.


Shared Living

Dave Toeniskoetter
President and CEO
Dungarvin, Inc.                 

Noal Presley
Executive Vice President
Midwest Division for Resources for Human Development, Inc.

Nancy Thaler
Deputy Secretary
Pennsylvania Office of Developmental Programs

Ms. Thaler, Mr. Presley, Mr. Toeniskoetter discussed Shared Living as a support option for people with intellectual and developmental disabilities. Ms. Thaler spoke about Shared Living from a state perspective, while Mr. Presley and Mr. Toeniskoetter shared their perspectives and experiences as agency providers. This presentation focused on what distinguishes Shared Living from other support arrangements, the differences between employment-based and contractor-based Shared Living arrangements, along with best practices to assure that Shared Living arrangements are successful and comply with Department of Labor and Internal Revenue Service rules.


Reframing Expectations at all Levels
LANSKY.pdf (2MB)
SIMONS.pdf (2MB)

Setting high expectations early in the lives of families with young children with disabilities is a key part of families (and their children) expecting their children to have a good life in the community as an adult, with a job, responsibilities, friends and community connections. Expecting the same things in life for children and adults with disabilities as for those without disabilities takes reframing, support and training staff and partners. Three states shared their insights, ideas and experiences in how state DD agencies, along with their partners, can begin to shape early expectations of a good life in the community.

Anna Lansky
Deputy Director
Oregon Office of Developmental Disabilities Services

Ms. Lansky discussed Oregon's work with youth in transition, including engagement with the school system and families. She highlighted the retooling of how the Individual Support Plan to enhance youth interest and exploration in employment provides a deeper exploration into why someone says they do not want to work and what barriers could be addressed to look at employment.

Bernie Simons
Deputy Secretary
Maryland Developmental Disabilities Administration
NASDDDS Board President

Mr. Simons talked about Maryland's current Transformation Initiative that includes five main areas; with one being supporting families. Mr. Simons explained why Maryland is launching into the LifeCourse Framework at the same time they are redesigning the overall state system.

Wanda Felty
Leadership and Advocacy Coordinator
Center for Learning and Leadership

Heather Pike
Administrative Director
Oklahoma Family Network

Ms. Felty and Ms. Pike shared their experience in reframing expectations, spreading the message of 'The Good Life' for all across their state. They have coupled this message with the LifeCourse framework lens to help individuals and families understand their right to live, love, work, play and worship in the community, providing a set of tools to make the lives they want possible. Oklahoma has taken this 'Good Life' message all the way to the governor's special task force to address the waitlist.