Supporting Families throughout the Life CourseJuly 23, 2014Mary Lee FayNational Association of State Directors of Developmental Disabilities Services (NASDDDS)

What is changing around us Impact of change on state systems Responding to change – Supporting Families throughout the life course

Outcomes for Today

• 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

A Vision that People…..

4

The job of leaders is to see what’s changing and figure out the best

response.

Demographic Climate Change

Aging demographics Federal and State funding Workforce

NASDDDSNATIONAL ASSOCIATION OF STATE DIRECTORS OF DEVELOPMENTAL DISABILITIES SERVICES 6

Aging Baby Boomers

Baby Boomer TsunamiEvery day 10,000 Baby Boomers qualify for

Social Security

Cost of Long Term Care = Aging

National Data from the Genworth 2013 Cost of Care StudyHome Care Providers, Adult Day Health Care Facilities,

Assisted Living Facilitates and Nursing Homes

$44,479

$16,900

$83,950

$41,400

Competition for Funds in the Future

Social Services Funding

Shortage of Care Givers

15,000,000

30,000,000

45,000,000

60,000,000

75,000,000

2000 2005 2010 2015 2020 2025 2030Source: U.S. Census Bureau, Population Division, Interim State Population Projections, 2005

Females aged 25-44 Individuals 65 and older

Larson, Edelstein, 2006

Shortages of Caregivers as America AgesA 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

The Waiting List

Growth in public funding will slow

Workforce will not keep pace with demand

People Waiting

For Services

Residential Capacity

Growth Needed

76,677 460,597 16.6%

RISP 2011

15,000,000

30,000,000

45,000,000

60,000,000

75,000,000

2000 2005 2010 2015 2020 2025 2030Source: U.S. Census Bureau, Population Division, Interim State Population Projections, 2005

Females aged 25-44 Individuals 65 and older

Thinking about Cost for the Long Term

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

Type of Service

Cost per Person

20 yrs. Cost 30 yrs. Cost

ICF/MR Institution

$238,500 $4,770,000 $7,155,000

HCBS 24 hr. staffed Residential

$150,000 $3,000,000 $4,500,000

Shared Living $50,000 $1,000,000 $1,500,000

Support in Own or Family Home

$25,000 $500,000 $750,000

RealityWe 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

How Are We Responding?

Highest Cost

Lowest Cost

Nudging the System

Source: John Agosta, Human Services Research Institute

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.

Big House State Op ICF-

MRs

CommunityICF-MRs HCBS

WaiversComprehensi

ve & Specialty Waivers Supports

WaiversState Funded

Family Support Services

Employment

People living with family: 89%

528,00013%

672,00012%

3,500,00075%

Receiving Services Out of Home 13%

Receiving Services Living at Home 12%

Not Receiving Services - Living at Home 75%

4.7 Million people with I/DD

Families as Primary Caregivers

1998

1999

2000

2001

2002

2003

2004

2005

2006

2007

2008

2009

2010

2011

0

200,000

400,000

600,000

800,000

1,000,000

1,200,000 57.9%

Arizona 86%Calif. 71%Florida 70%Idaho 75%*S.C. 72%*N.J. 71%

Place of Residence for Service Recipients with IDD 1998 - 2011

RISP 2011RTC on Community Living UCED U of Minnesota

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?

No.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

Connections

Day-to-Day

Healthy & Happy

Friends & Family

Meaningful Activity

Discovery

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

supportstofamilies.org

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

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

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

Creating Blue Space, Hanns Meissner, 2013

The Golden Circles

WhyHowWhat

“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, startwithwhy.com

Reframing Our ThinkingPeople 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.

INDIVIDUALSlive within the context of

THEIR FAMILY

Lifelong Impact of FamilyBiologically: Likes, dislikes, skills, abilities

Policy: Dreams, Aspirations,House rules, cultural

rules, expectations

Environmentally: Neighborhood, socio-economic, education

Socially: Family and friend network, connection with

community members

Who are we talking about?

All 4.7 Million people with developmental disabilities

Focusing on ALL

25%75%

National % Receiving State

DD Services

All 4.9 Million people with developmental disabilities

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

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

Both in practice with individuals and

in policy changes for systems

Thinking About All Life Stages

A Vision for Supporting Individuals & Families

Individual with Disability:achievement of self-

determination, interdependence, productivity, integration

and inclusion in all facets of community life

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

Families:will be supported in ways that maximizes their capacity, strengths and unique abilities so they can best support, nurture, love and facilitate……

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

Family as system

The family unit is a system with cycles

Reciprocal Roles of Family Members

Caring About

Affection & Self-Esteem

Repository of knowledge

Lifetime commitment

Caring For

Provider of day-to-day careMaterial/FinancialFacilitator of inclusion and membershipAdvocate for support

Supports should enhance real lives

Current Support System

Real People, Real Lives with Integrated Supports

Trajectory towards

Outcomes

Trajectory towards things

unwanted

Vision for Good Life

Vision of What I Don’t Want

Both in practice with individuals and in policy changes for systems

Identifying What is Impacting Life's Trajectory

Applying the Life Course Perspective

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

Community

Family

Person

with Disability

Community

Family

Disability Services

Person with Disability

Uncharted with Supports

Charted

• Trajectory• Transition• Life Events

Bigger than Family Support:Requires Organizing Culture, Policies &Practices

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

Thinking Across All Life Domains

Daily Life & Employment

What a person does as part of everyday life – school, employment, volunteering, routines, life skills Healthy

Living

Managing and accessing health care & staying well – medical, mental health, behavioral health, developmental, wellness & nutrition

Community Living

Where and how someone lives – housing and living options, community access, transportation, home adaptations & modifications

Safety & Security

Staying safe and secure – emergencies, well-being, guardianship options and alternatives, legal rights and issues

Social & Spirituality

Building friendships and relationships, leisure activities, personal networks, faith community Citizenship &

Advocacy

Building valued roles, making choices, setting goals, assuming responsibility and driving how one’s own life is lived

Integrated Strategies for Supports: Not just formal services

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

Inter-Agency Collaboration & Partnerships

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”

What is happening in the CoP States?

DC

CT

MO

TN

WA

OK

Systems Change Framework

*Adapted from SELN Framework

Support Physical, Emotional, Intellectual and Financial Well-being

A good life is often an uncharted life

Vision for the FutureNot Yet Discovered

• A new possibility Uncharted

• Own home• Shared Living Space• Co-op• Environmental Adaptations

Slightly Charted• Independent Supported Living

Charted• Training Centers• Intermediate Care• Group Homes

Community Living: Housing

Vision for the FutureNot Yet Discovered

• A new possibilityUncharted

• Micro-enterprise• College/Tech Schools• Career• Military

Slightly Charted• Supported Employment• Volunteerism• AmeriCorps/VISTA

Charted• Sheltered Workshops• Day Habilitation

Daily Life: Employment

Vision for the FutureNot Yet Discovered

• A new possibilityUncharted

• Remote Monitoring• Assistive Technology• Time banks• Human-service coops

Slightly Charted• Self-directed Services• Respite• Micro-boards• Companion Model

Charted• Staff hired by Provider

Long Term Daily Supports

Vision for the FutureNot Yet Discovered/Uncharted

• Self-determination• Emotional Well-being• Personal Development• Interpersonal Relationships• Physical and Material Well-being• Social Inclusion • Rights

Slightly Charted• Meaningful Roles• Normalization

Charted• Health and Safety• Guardianship

Overall Quality of Life

Connecticut• 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

CT

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

DC

Washington

• 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

WA

Tennessee

• 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

TN

Missouri

• 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

MO

Oklahoma

• Retraining intake staff• *Blue Ribbon Pane for the waiting list is using the

three domains of support to design the response to families

OK

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Never forget your

WHY

Families Are the Long Term Care SystemFamilies 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.

ContactMary Lee Fay

National Association of State Directors of Developmental Disabilities Services (NASDDDS)703-683-4202mlfay@nasddds.org

supportstofamilies.org