Supporting Families & Getting Level 3 ChangesJuly 23, 2014

Mary Lee Fay

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

Seeing the Change that is Coming:Demographic Climate Change

Aging demographics

Federal and State funding

Workforce

NASDDDS

NATIONAL ASSOCIATION OF STATE DIRECTORS OF DEVELOPMENTAL DISABILITIES SERVICES 2

National Institute on Aging

Baby-Boom Generation

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 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

Pressures on Funding

States can’t afford to expand services that require 24 hour

care.

89% of People with I/DD are Supported by Family

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

Family Caregivers are the Backbone of the Nation's Long-Term Care System 39% of all adult Americans (2 of every 5) care for a loved one who is sick or disabled, an increase from 30 % in 2010.

It is not just women doing the caregiving. • Men are almost as likely to be caregivers as

women (37% m; 40% w)• 36% of Americans between ages 18 & 29 are

caregivers• Almost half of family caregivers perform complex

medical/nursing tasks for their loved ones — such as managing multiple medications, providing wound care, and operating specialized medical equipment.

The Role of Family Members is Critical

85% of older family care recipients receive care from their spouses or children.

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

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

The Question Is…..Not whether people who are aging and/or disabled will be living with and relying on their families for support but…… whether they 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

Reframing Our ThinkingWhat have we learned? Reframing the Conversation at All Levels

15

DC

CT

MO

TN

WA

OK

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

Applying the Life Course Perspective

Connections

Day-to-Day

Healthy & Happy

Friends & Family

Meaningful Activity

Discovery

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%

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

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

Systems Change Framework

*Adapted from SELN Framework