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Supporting Families throughout the Life Course. July 23, 2014 Mary Lee Fay National Association of State Directors of Developmental Disabilities Services (NASDDDS). Outcomes for Today. What is changing around us Impact of change on state systems

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supporting families throughout the life course

Supporting Families throughout the Life Course

July 23, 2014

Mary Lee Fay

National Association of State Directors of Developmental Disabilities Services (NASDDDS)

Outcomes for Today
  • What is changing around us
  • Impact of change on state systems
  • Responding to change – Supporting Families throughout the life course
A Vision that People…..
  • Will be healthy, happy and safe
  • Will have family and friends in their lives
  • Will go to school and be fully involved
  • Will work at a good paying job
  • Will make decisions about their life – both major and minor
  • Will be contributing citizens of their community
  • Will have dreams that come true
demographic climate change
Demographic Climate Change
  • Aging demographics
  • Federal and State funding
  • Workforce

NASDDDSNational Association of State Directors of Developmental Disabilities Services

aging baby boomers
Aging Baby Boomers

Baby Boomer Tsunami

Every day 10,000 Baby Boomers qualify for Social Security

cost of long term care aging
Cost of Long Term Care = Aging





National Data from the Genworth 2013 Cost of Care Study

Home Care Providers, Adult Day Health Care Facilities,

Assisted Living Facilitates and Nursing Homes

shortage of care givers
Shortage of Care Givers

Larson, Edelstein, 2006

shortages of caregivers as america ages
Shortages of Caregivers as America Ages

A labor shortage is worsening in one of the nation's fastest-growing occupations—taking care of the elderly and disabled-just as baby boomers head into old age.

Wall Street Journal, April 15, 2013

confronting reality
Confronting Reality

Growth in public funding will slow

Workforce will not keep pace with demand

The Waiting List

thinking about cost for the long term
Thinking about Cost for the Long Term

Data Source: Lakin, K.C. MSIS and NCI data from 4 states (1,240 Individuals)


We can’t afford out-of-home 24-hour staffed models of support for everyone;Families have been and are the primary support for people with I/DD

Big House State Op ICF-MRs

The idea is to nudge a system down the incline to reduce per person expenditures.

The idea is to nudge a system to be person-centered, to support families, and involve people in their community.


Highest Cost

HCBS WaiversComprehensive & Specialty Waivers

Supports Waivers

State Funded Family Support Services


the System

Lowest Cost


Source: John Agosta, Human Services Research Institute

families as primary caregivers
Families as Primary Caregivers

Place of Residence for Service Recipients with IDD 1998 - 2011


Arizona 86%

Calif. 71%Florida 70%

Idaho 75%*

S.C. 72%*

N.J. 71%

RISP 2011

RTC on Community Living UCED U of Minnesota

the questions is
The Questions Is…..

Not whether people who have developmental disabilities will be living with and relying on their families for support but…… whether people and their families will struggle alone or have a great life because the supports are there for them and they are part of their community.

does everyone have to live with their family
Does Everyone Have to Live with Their Family?


It means we have to maximize the extent to which as many people as possible can live great lives without 24 hours of paid supports using RELATIONSHIP-BASED OPTIONS.

  • Family
  • Extended Family
  • Friends
  • Shared Living
  • Independently or with a friend
  • Paid Companion
applying the life course perspective
Applying the Life Course Perspective

Healthy & Happy

Friends & Family


Meaningful Activity



  • Washington
  • Missouri
  • Connecticut
  • District of Columbia
  • Oklahoma

Project Goal
  • To build capacity through a community of practice across and within States to create policies, practices and systems to better assist and support families than include a member with I/DD across the lifespan.
  • Project Outcome
  • State and national consensus on a national framework and agenda for improving support for families with members with I/DD.
  • Enhanced national and state policies, practices, and sustainable systems that result in improved supports to families.
  • Enhanced capacity of states to replicate and sustain exemplary practices to support families and systems.
type of change that is needed
Type of Change that is Needed

Transformation Change

Fundamental reordering of thinking, beliefs, culture, relationships, and behavior

Turns assumptions inside out and disrupts familiar rituals and structures

Rejects command and control relationships in favor of co-creative partnerships

Transitional Change

  • “Retooling” the system and its practices to fit the new model
  • Mergers, consolidations, reorganizations, revising systematic payment structures,
  • creating new services, processes, systems and products to replace the traditional one

Creating Blue Space, HannsMeissner, 2013

the golden circles
The Golden Circles

“Nobody ever comes along because of what you do or how you do it. They come along because of why you do it.

And because you believe in why you are doing it.

And if they can find a way to believe in the same thing, then they will come along with you. Not for you, but for themselves. Because they believe it too.”

Simon Sinek,

reframing our thinking
Reframing Our Thinking

People with disabilities and their families…

have access to resources and supports, that are person and family centered and directed, that enhance individual lives and maintain the family well-being.

lifelong impact of family
Lifelong Impact of Family

Biologically: Likes, dislikes, skills, abilities

Socially: Family and friend network, connection with community members

Environmentally: Neighborhood, socio-economic, education


Dreams, Aspirations,

House rules, cultural rules, expectations

who are we talking about
Who are we talking about?

All 4.7 Million people

with developmental disabilities

focusing on all
Focusing on ALL

All 4.9 Million people with developmental disabilities



National % Receiving State DD Services

Based on national definition of developmental disability with a prevalence rate of 1.49%

thinking about all life stages
Thinking About All Life Stages

Both in practice with individuals and

in policy changes for systems

Birth---Early Child---School------------Transition--------------------Adulthood------------------Aging

a vision for supporting individuals families
A Vision for Supporting Individuals & Families

Individual with Disability:

achievement of self-determination, interdependence, productivity, integration

and inclusion in all facets

of community life


will be supported in ways that maximizes their capacity, strengths and unique abilities

so they can best support, nurture, love and facilitate……

Birth-----Early Child------School-------Transition------------------------------Adulthood--------------------------------Aging

*National Definition for “Supporting Families” (2011 Wingspread)

family as system
Family as system

The family unit is a system with cycles

identifying what is impacting life s trajectory
Identifying What is Impacting Life's Trajectory

Vision for Good Life

Trajectory towards Outcomes

Vision of What I Don’t Want

Trajectory towards things unwanted

Both in practice with individuals and

in policy changes for systems

applying the life course perspective1
Applying the Life Course Perspective

Uncharted with Supports

  • Trajectory
  • Transition
  • Life Events


Birth-----Early Child----School----Transition----------Adulthood----------Aging

bigger than family support requires organizing culture policies practices
Bigger than Family Support:Requires Organizing Culture, Policies &Practices

Birth-----Early Child----School----Transition-----------Adulthood--------Aging

inter agency collaboration partnerships
Inter-Agency Collaboration & Partnerships

Pediatrician, Families and Friends, Faith-based

IDEA Part C, Parents as Teachers, Health, Headstart

School, Special Education, Health, Recreation

Vocational Rehab, Health Employment, College, Military

Disability Services, Health, Housing, College, Careers

Retirement, Aging System, Health

how are states creating level 3 changes around supporting families
How are states creating level 3 changes around supporting families
  • Changing what happens at the front door
  • Cross department life span team
  • Creating Parent to Parent Network
  • Integrating “supporting families” into the K Plan
  • Surveyed families who were on the “no paid services”
systems change framework
Systems Change Framework

*Adapted from SELN Framework



  • One full time people in Central office to focus on systems change to support families
  • Changing eligibility process to be more family friendly
  • Cross department life span team
  • Creating Sibling Network
  • Creating Consistent Message
  • Focusing on “community teams” with new partners
district of columbia
District of Columbia


  • Creating waiver to support families
  • Policy to add families and self-advocates to policy teams;pay stipends…and putting that in legislation
  • Legislation to create a family advisory council across all DC programs with appointment by the mayor with includes grants to support it
  • Regulation changes to allow families to be paid as direct support in all services
  • Creating Parent to Parent Network


  • Infused the life course concept into their existing “Informing Families, Building Trust” messaging efforts
  • Integrating “supporting families” into the K Plan
  • Surveyed families who were on the “no paid services”
  • Redesigning the process for the first point of contact


  • Redesigning the process for the first point of contact
  • Working with Parent to Parent Network
  • Communication strategies on “supporting families”(magazine and monthly listserv)
  • Including Early Childhood Part C to table
  • Integrating with “employment” initiatives


  • States lead an 12 Regional TA positions for systems change efforts to support families
  • Retraining program for support coordinator
  • Partnerships for Hope Waiver focuses on employment and supports to families
  • Quality Outcomes redesigned to align with live domains


  • Retraining intake staff
  • *Blue Ribbon Pane for the waiting list is using the three domains of support to design the response to families
families are the long term care system
Families Are the Long Term Care System

Families are also the primary caregivers for most people with developmental disabilities. The Quality of Life that people with developmental disabilities experience depends on the quality of life of the care givers. The better we support caregivers, the better lives people with developmental disabilities will have.

To effectively support families, we must partner with them.


Mary Lee Fay

National Association of State Directors of Developmental Disabilities Services (NASDDDS)


[email protected]