State DD Systems

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State DD Systems
Helping States Build A New Paradigm A
Values-Based Response to Demographic and
Economic Realities

• Administration on Developmental Disabilities
• Technical Assistance Institute
• June 10, 2008

Nancy Thaler Executive Director
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Part 1

• The Challenges We Know

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Where and with whom people Live
160,000 people 1966 38,000 people 2008
10 States Have No Institutions
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Home Sizes Getting Smaller
RISP Report 2007, Prouty Lakin
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• Where are we?

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Moving from Service Life to Community Life
Service Life
CommunityLife
A Good But Paid Life
Michael Smull Chair of The Learning Community
for Person Centered Practices Director of
Support Development Associates
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Why Do So Few People Have a Community Life?

• Weve had IEPs and IHPs
• Self determination is the goal even of
• ICFs/MR
• Why arent we Person-centered ?

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Its Not Easy

• We have to ask people about everything
• no decisions about them without them
• It takes more time than doing it the old way
  when we knew best.
• Their decisions preferences require us to do
  things that are hard
• Risk taking requires us to think and behave
  differently
• We are drawn into family dynamics
• Money no longer controlled by providers
• Requires more complex strategies in order to
  listen to the person and meet assurances

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Moving from Service Life to Community Life
Requires Leadership and Hard Work
CommunityLife
Service Life
A Good But Paid Life
Michael Smull Chair of The Learning Community
for Person Centered Practices Director of
Support Development Associates
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NASDDDS Communities of Practice What State
Systems are Learning

• Community of Practice like minded people who
  form to share what they know and to learn from
  one another regarding some aspects of their work.
• Building Person-Centered Organizations
  Fulfilling the Promise of Person Centered
  Planning
• Supported Employment Leadership Network

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Building Person-Centered Organizations
Fulfilling the Promise of Person Centered
Planning Real Choices System Change Grant

• 2.1M for three years
• Six States
• Virginia Georgia North Carolina
• Oregon Tennessee South Dakota
• Partners
• Michael Smull
• Nat. Assoc. State Directors of DD Services
• Virginia Commonwealth University Center for
  Excellence

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Three Levels of Change

• Level One changes in day to day practice that
  impact persons lives and their relationships
  with formal and informal supports
• Level Two changes in provider agency management
  and leadership affecting organizational policy,
  practice, and program outcomes
• Level Three changes in service delivery system
  infrastructure statewide resulting from changes
  in regulation, state policy and system design.

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The Role of the Partners

• NASDDDS will
• a) coordinate activities and share lessons
  learned through the development of a dynamic
  Community of Practice (CoP) among the
  participating states,
• (b) assist in the preparation, publication and
  dissemination of project materials and outcomes,
  and
• c) provide technical assistance
• VCU will conduct the evaluation

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Focus- Three Levels of Change

• Level One day to day practice that impact
  persons lives and their relationships with
  people
• Level Two provider agency management
  leadership affecting organizational policy,
  practice, and program outcomes
• Level Three system infrastructure statewide
  resulting from changes in regulation, state
  policy and system design.

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Supported Employment
Leadership Network SELN

• Sixteen States
• Washington, Oregon, California, Texas, Colorado,
  Louisiana, New Mexico, Michigan, Pennsylvania,
  South Carolina, West Virginia, Massachusetts,
  Connecticut, Delaware, Maryland, Hawaii
• Funded by the member states
• Third year
• Partners
• University of Massachusetts Institute on
  Community Inclusion

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What States are Learning

• Clarity of Goals
• Shared value system
• Leadership- key players with shared values
• System Level Strategies
• Flexible policies employment first policies
• Flexible funding support innovation, incentives
• Using data to communicate goals and progress
• Training programs that diffuse innovation
  throughout the state

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Part 1

• The Challenge Before Us

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Demographic Shift Americas Care Gap
Larson, Edelstein, 2006
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U.S. Demand for Workers Projections 2002 2012
Source Occupational Employment Projections
February 2004, U.S. Bureau of labor Statistics.
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(No Transcript)
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www.gao.gov/cghome.htm
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Waiting for Residential Services
Lakin Residential Services Status and Trends 2006
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Service Cost Comparisons
Less than 24 hr
David Braddock State of the States 2008
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Reality

• We cant afford to pay for 24 hr. residential
  services for everyone.
• We cant staff 24 hr. residential services even
  is we could afford to.
• If we could, would we want to?

Braddock, D., Hemp R., Rizzolo, M.C., et al.
(2005) The State of the States in Developmental
Disabilities. Hemp, R., Rizzolo, M.C, (April
2006). State of the states project collection of
family support data. Coleman Institute for
Cognitive Disabilities, the University of
Colorado. Prouty, S,mith and Lakin Residential
Services and Trends
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An Emerging Paradigm More Adults are Living
with their Families
Over half (57) of all individuals with
MR/DD receiving publicly financed supports live
in the home of a family member. Five states
reported that 70 or more of all persons
receiving support resided with their families.
Lakin Residential Services Patterns and Trends
2007
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Supporting People Living with Their Family What
Does it Mean?
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It Means that..

• People live in the context of family
• or an alternate shared living arrangement
• Personal outcomes will be influenced by the
  people the person lives with
• Choice self direction relationships a job
  etc.
• The provision of community services will have to
  include
• Support to the family/shared living
• Involvement in family dynamics supporting the
  person in the context of their family

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It Means that..

• The individuals identity, personal preferences
• and dreams must be primary
• Families and care givers need support,
• training and information
• Training
• Case managers must plan for the person within the
  family context
• Staff must be trained to work with others at home
  to support the person with a disability
• The person with a disability must have
  opportunities outside of home...support self
  advocacy.

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• What is the New Paradigm?
• Types of services?
• What should system infrastructure look like?
• Program Policies?
• Training needed?
• How is quality assured?
• Risks or problems with these services? How can
  they be managed?
• Reimbursement methods?
• Legislation needed?
• Who gets 24 hr. residential services?

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Part 3
Draft Strategic Plan 2008
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Mission and Principles

• Mission
• To assist member state agencies in building
  person
• centered systems of support for people with
• developmental disabilities and their families.
• Guiding Principles Individuals with
  developmental disabilities have the right to
• Be treated with respect and dignity
• Be independent and make individual choices
• Participate in family and community life
• Have opportunities to maximize their full
  potential
• Receive outcome based services

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Current Reality

• We cant afford to pay for 24 hr. residential
  services for everyone.
• We cant staff 24 hr. residential services even
  is we could afford to.

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Challenge Designing the New Paradigm

• Serving people in the context of family
• its not just family support.
• Define the services are families service
  recipients?
• Determine how much service is needed to avoid the
  need for 24 hr. residential services
• Honor self determination
• Rethink the role of case managers
• Define and measure quality
• Identify the risks and how are they managed
• Financing and reimbursement methods
• Establish self-advocacy as a part of the service
  system

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ChallengeDesigning the New Paradigm

• Determining who gets 24 hr. residential services
• Developing and expanding non-24 hr. service
  options for those who no longer live with nuclear
  families
• Extended families
• Shared living/host home

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Other Environmental Influences

• Interest in Self-Direction Continues to Grow
• Especially among families supporting family
  members at home
• Self-directed services can be cost effective
• Self-Advocacy Needs Support
• As more and more people live with family into
  adult hood, the need for peer support and
  opportunities to develop personal self advocacy
  skills becomes more critical
• Self advocacy organizations cannot sustain
  themselves without reliable financial and
  organizational support

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Environmental Influences cont.

• Increased Emphasis on Measuring Quality and
• Increased Reliance on Collecting Using Data
• Deficit Reduction Act requirements
• 1915 (C) Waiver Application requirements
• Utilization of Managed Care

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Environmental Influences

• Advances in Health Care and Technology
• Smart Houses
• Self-monitoring health devices
• Electronic supervision
• Mobility and communication devices
• Medications to treat mental illness
• Post traumatic stress treatments
• Research on the impact of the environment and
  food on behavior

Autism
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Environmental Influences

• State and Federal Initiatives to Restructure Long
  Term Care Systems
• Agency consolidation and/or reorganization
• Single points of entry
• Managed care contracts
• Use of information technology to standardize
  practice across systems

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Environmental Influences

• Leadership Turnover in State Agencies
• 19 new state directors in 2007
• 6 new state directors in 2008
• Retirements of many senior managers

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Environmental Influences

• Economic Challenges
• 9 trillion federal deficit
• 25 states face total budget shortfalls in 2009 6
  others expect budget problems
• 2008 election new administration
• Cost of oil rising
• Unemployment
• Recession
• Federal deficit
• Rising obligations in Social Security and
  Medicare
• Foreclosures
• Costs of the wars
• Health Care Insurance Crisis
• Environment global warning

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Part 4

• States Need Your Help

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Government Leaders Can.

• Do what people want lead them where they want
  to go
• Do what people wont object to Show Them the
  Way!
• Do what people dont want as long as there arent
  enough of them or they arent powerful enough to
  stop the process

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• State MRDD Director Pressure Points

Legislature
Governor
Cabinet
The Citizens
MR/DD Director
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• State MRDD Director Pressure Points

UCED
PA
Legislature
Governor
DD Council
Cabinet
The Citizens
MR/DD Director
Advocates
Providers
Medicaid
Self Advocates
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What States Need Help With

• Changing to a new paradigm to develop effective
  systems of services that support people living
  with their families or in alternative
  family/community options
• Developing the capacity to monitor and improve
  quality
• Learning about and applying advances in health
  care and technology
• Responding to initiative to restructure long-term
  care service systems
• Developing responsive financial management
  strategies
• Developing and using of information technology
• Leadership development programs

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How Can You Help?

• Build a Relationship with the Director
• Decide to work on the inside not from the
  outside.
• Ask how you can help
• Keep directors informed and provide information
  they dont have access to
• Offer to do what the DD Agency cant do
• Fund pilot/demos to achieve mutual goals
• Support self advocates
• Hold listening sessions with stake holders
• Publications

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Examples of DD Council/State Agency Partnerships

• Ohio Project Search Dual Diagnosis Project
• Georgia Project Search
• Penna.- Strategic Planning Developed Independent
  Monitoring Teams
• Vermont - Facility Closure Training Programs
• Illinois Research and Strategic Planning
• North Carolina Systems Change Self Advocacy

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Opportunities

• Systems Transformation and Money Follows the
  Person
• SELN Project 16 states http//www.seln.org/
• Nevada DD Council pays membership feel
• California
• Person Centered Organizations Projects
• Tennessee DD Council funds participation
• National Core Indicators - measuring quality - 30
  States http//www.hsri.org/nci/

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What States Need Help With

• Changing to a new paradigm to develop effective
  systems of services that support people living
  with their families or in alternative
  family/community options
• Developing the capacity to monitor and improve
  quality
• Learning about and applying advances in health
  care and technology
• Responding to initiative to restructure long-term
  care service systems
• Developing responsive financial management
  strategies
• Developing and using of information technology
• Leadership development programs

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National Project Partnerships

• Virginia Commonwealth University - Person
  Centered Organizations
• University of Mass. Institute on Community
  Inclusion - Supported Employment Leadership
  Network Publications NASDDDS Research
  Committee
• University of Minnesota Institute on Community
  Integration - Publications NASDDDS Research
  Committee Analysis of National Core Indicator
  data
• University of Delaware - Leadership Institute
• Human Services Research Institute HSRI - National
  Core Indicators NASDDDS Research Committee
• Michael Smull - Person Centered Organizations