Supporting Families throughout the Life CourseJuly 23, 2014

Mary Lee Fay

National 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

NASDDDS

NATIONAL 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 2030

Source: 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 2030

Source: 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 Waivers

Comprehensive &

Specialty Waivers

Supports Waivers

State 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

Nursing Home

24144 25533 32195 35155 34820 35005 32899 30027 28206 26013 26080 29608 31832 33661

16+

89348 82718 82582 77180 72742 72474 69148 66501 66125 62496 59447 59604 57028 55572

7 to 15

53940 52863 52818 54333 54031 54325 58503 52888 56572 59002 53198 58235 55682 57486

1 to 6

108844

114546

124469

135322

135571

135569

142918

156610

157082

157765

160477

158621

167874

172769

Host Home

28122 31884 37367 40688 42272 45759 39857 35386 35302 36972 38262 40967 40060 44214

Family

325650

355192

391859

451677

482479

500004

503641

533048

569020

576163

588594

599152

592180

610299

Own Home

62669 65006 73147 80242 86694 90597 107157

101143

104386

115659

115873

122088

127455

120313

100,000

300,000

500,000

700,000

900,000

1,100,000

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

Why

HowWhat

“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

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Family Systems Theory

Family systems theory is a theory introduced by Dr. Murray Bowen that suggests that …….

……individuals cannot be understood in isolation from one another, but rather as a part of their family, as the family is an emotional unit.

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Family- Centered Help Giving Practices

Research tells us that two kinds of program staff behavior contribute significantly to parent, family, and child behavior:

1. listening to and being responsive to family priorities

2. helping families learn skills to obtain desired resources and supports

Carl Dunst and Carol Trivette

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%

Supports should enhance real lives

Current Support System

Real People, Real Lives with Integrated Supports

Lifelong Impact of Family

Biologically: 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

Trajecto

ry 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

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

Both in practice with individuals and

in policy changes for systems

Thinking About All Life Stages

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

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 care

Material/Financial

Facilitator of inclusion and membership

Advocate for support

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

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One in four newborns are Hispanic

Of children under age 5, more than 50% are non-white.

Poverty rates of toddlers 41% Black 32% Hispanic 13% White 11% Asian

48% of births are to unmarried women – most in their twenties

Pew Research NY Times 6.8.13

The Cultural Make of Families is Changing Rapidly

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

Vision for the Future

Not Yet Discovered

• A new possibility

Uncharted

• 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 Future

Not 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 Future

Not Yet Discovered

• A new possibility

Uncharted

• 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 Future

Not 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

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Acting on the evidence Program staff can ensure what they do works when they:

• Use good listening skills and respond to family concerns and requests

• View families in a positive way and treat them with dignity and respect

• Provide families information for them to make informed choices

• Encourage families to use what they already do well and help them learn new skills

• Strengthen family capacity to achieve what is important to them

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Technology is Advancing

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

• Looking at first point of contact. How to change the front door

• Working with Governor’s Blue Ribbon Task force on Waiting Lists in OK

• Changing the culture of service coordination

OK

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How Others are Responding

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Easing Britain’s Generation strain…

Establishing a different starting point for social care services by asking: “what do people need to live a good life?”

Acknowledging family and mutual supports as the frontline of care rather than services.

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ProposalsEngland Shared budget” to enable those using community care to arrange this collectively.

Networks to help older people to stay active and healthy, help busy families balance work and care and reduce pressures on the NHS.

Care coordinators providing a single local point of contract, to replace the “case management” in every area by 2020.

Germany Targeting skilled immigrants, including medical workers, mathematicians, IT specialists, natural scientists and technicians, and helping them integrate into society

Subsiding developers who make better homes for the elderly and forcing them to build user-friendly homes for the aged.

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Proposals

The Netherlands Dutch research has shown that although plenty of people are prepared to help a neighbor, they will not generally do so until they are asked. People are even less likely to ask for support. Policy should focus on making it easier for people both to offer and ask for help.

Australia Local Area Co-coordinators (LACs) recruited from a range of backgrounds, have close links to local neighborhoods and operate an ‘open door’ policy, providing information, support, advocacy and advice to all, regardless of their support needs or their entitlements to funding.

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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)

703-683-4202

mlfay@nasddds.org

supportstofamilies.org