Transcript Document

Supporting Families
& Getting Level 3 Changes
July 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
Baby-Boom Generation
National Institute on Aging
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
75,000,000
60,000,000
45,000,000
30,000,000
15,000,000
2000
2005
2010
2015
2020
2025
2030
Source: U.S. Census Bureau, Population Division, Interim State Population Projections, 2005
Females aged 25-44
Larson, Edelstein, 2006
Individuals 65 and older
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
528,000
13%
4.7 Million people with I/DD
Receiving Services Out of Home 13%
672,000
12%
Receiving Services Living at Home 12%
Not Receiving Services - Living at Home 75%
3,500,000
75%
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
Place of Residence for Service Recipients with IDD 1998 - 2011
1,200,000
57.9%
1,000,000
800,000
600,000
400,000
200,000
0
1998
Own Home
62,669
Family
325,65
Host Home
28,122
1 to 6
108,84
7 to 15
53,940
16+
89,348
Nursing Home 24,144
1999
65,006
355,19
31,884
114,54
52,863
82,718
25,533
2000
73,147
391,85
37,367
124,46
52,818
82,582
32,195
2001
80,242
451,67
40,688
135,32
54,333
77,180
35,155
2002
86,694
482,47
42,272
135,57
54,031
72,742
34,820
2003
90,597
500,00
45,759
135,56
54,325
72,474
35,005
2004
107,15
503,64
39,857
142,91
58,503
69,148
32,899
2005
101,14
533,04
35,386
156,61
52,888
66,501
30,027
2006
104,38
569,02
35,302
157,08
56,572
66,125
28,206
2007
115,65
576,16
36,972
157,76
59,002
62,496
26,013
2008 2009 2010 2011
115,87Arizona
122,08 127,45
86%120,31
588,59 599,15 592,18 610,29
Calif. 71%
38,262 40,967 40,060 44,214
70%172,76
160,47Florida
158,62 167,87
53,198Idaho
58,235 75%*
55,682 57,486
59,447 59,604 57,028 55,572
S.C. 72%*
26,080 29,608 31,832 33,661
N.J. 71%
RISP 2011
RTC on Community Living UCED U of Minnesota
Reality
We can’t afford outof-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.
•
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.
•
Extended Family
•
Friends
•
Shared Living
•
Independently or
with a friend
•
Paid Companion
Reframing
Our Thinking
What have we learned?
Reframing the Conversation at All Levels
CT
OK
DC
TN
MO
WA
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
TRANSFORMATION CHANGE
• “Retooling” the system and its
practices to fit the new model
• Fundamental reordering of
thinking, beliefs, culture,
relationships, and behavior
• Mergers, consolidations,
reorganizations, revising
systematic payment structures,
• creating new services,
processes, systems and products
to replace the traditional one
• Turns assumptions inside out
and disrupts familiar rituals
and structures
• Rejects command and control
relationships in favor of cocreative partnerships
Creating Blue Space, Hanns Meissner, 2013
Applying the Life Course Perspective
Healthy & Happy
Friends & Family
Discovery
Connections
Day-to-Day
Meaningful Activity
Focusing on ALL
All 4.9 Million people with developmental disabilities
75%
25%
National % Receiving
State DD Services
Based on national definition of developmental disability with a prevalence rate of 1.49%
Identifying What is Impacting
Life's Trajectory
Vision for Good
Life
Vision of What I Don’t Want
Both in practice with individuals and in policy changes for systems
Reciprocal Roles of Family Members
Affection & Self-Esteem
Caring About
Repository of knowledge
Lifetime commitment
Provider of day-to-day care
Material/Financial
Caring For
Facilitator of inclusion and
membership
Advocate for support
Systems Change Framework
*Adapted from SELN Framework