Transcript 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
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
Aging Baby Boomers
Baby Boomer Tsunami
Every day 10,000 Baby Boomers qualify for Social Security
Cost of Long Term Care = Aging
$44,479
$16,900
$41,400
$83,950
National Data from the Genworth 2013 Cost of Care Study
Home Care Providers, Adult Day Health Care Facilities,
Assisted Living Facilitates and Nursing Homes
Competition
for Funds
in the Future
Social Services Funding
Shortage of Care Givers
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
Shortages of
Caregivers as
America Ages
A labor shortage is worsening
in one of the nation's fastestgrowing occupations—taking
care of the elderly and
disabled-just as baby boomers
head into old age.
Wall Street Journal,
April 15, 2013
Confronting Reality
Growth in public funding will slow
Workforce will not keep pace with demand
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
Individuals 65 and older
The Waiting List
People Waiting
For Services
76,677
RISP 2011
Residential Capacity
460,597
Growth
Needed
16.6%
Thinking about Cost for the Long Term
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
Data Source: Lakin, K.C. MSIS and NCI data from 4 states (1,240 Individuals)
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
How Are We Responding?
The idea is to nudge a system to
down
be the
incline to reduce per
person-centered,
to support
person families,
expenditures.
and
involve people in their community.
Big House State
Op ICF-MRs
Highest
Cost
Community
ICF-MRs
HCBS Waivers
Comprehensive &
Specialty Waivers
Supports Waivers
Nudging
the System
State Funded
Family Support
Services
Lowest
Cost
Source: John Agosta, Human Services Research Institute
Employment
People living with family: 89%
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%
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
RISP 2011
RTC on Community Living UCED U of Minnesota
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%
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.
•
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
Applying the Life Course Perspective
Healthy & Happy
Friends & Family
Discovery
Connections
Day-to-Day
Meaningful Activity
• 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
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
The Golden Circles
Why
“Nobody ever comes along
because of what you do or how
you do it. They come along
because of why you do it.
How
And because you believe in why
you are doing it.
What
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
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 wellbeing.
INDIVIDUALS
live within the context of
THEIR FAMILY
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.
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
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%
Supports should
enhance real lives
Current Support System
Real People, Real Lives with
Integrated Supports
Lifelong Impact of Family
Biologically: Likes, dislikes,
skills, abilities
Environmentally:
Neighborhood, socio-economic,
education
Socially: Family and friend
network, connection with
community members
Policy:
Dreams, Aspirations,
House rules, cultural rules,
expectations
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
Thinking About All Life Stages
Birth---Early Child---School------------Transition--------------------Adulthood------------------Aging
Both in practice with individuals and
in policy changes for systems
Applying the Life Course Perspective
Uncharted with Supports
Community
Family
• Trajectory
• Transition
• Life Events
Person with
Disability
Charted
Community
Family
Disability
Services
Person with
Disability
Birth-----Early Child----School----Transition----------Adulthood----------Aging
Bigger than Family Support:
Requires Organizing Culture, Policies &Practices
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
Families:
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
The family unit is a system with cycles
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
Thinking Across All Life Domains
Daily Life &
Employment
Community
Living
Social &
Spirituality
What a person does as part
of everyday life – school,
employment, volunteering,
routines, life skills
Where and how someone
lives – housing and living
options, community access,
transportation, home
adaptations & modifications
Building friendships and
relationships, leisure
activities, personal networks,
faith community
Healthy
Living
Safety &
Security
Citizenship &
Advocacy
Managing and accessing health
care & staying well – medical,
mental health, behavioral
health, developmental,
wellness & nutrition
Staying safe and secure –
emergencies, well-being,
guardianship options and
alternatives, legal rights
and issues
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
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
The Cultural Make of Families is Changing
Rapidly
48% of births are to unmarried women –
most in their twenties
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
Pew Research NY Times 6.8.13
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?
CT
OK
DC
TN
MO
WA
Systems Change Framework
*Adapted from SELN Framework
Support Physical, Emotional,
Intellectual and Financial Wellbeing
Long Term Daily Supports
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
Community Living: Housing
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
Daily Life: Employment
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
Overall Quality of Life
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
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
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
DC
• 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
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
MO
• 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
Oklahoma
OK
• 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
How Others are
Responding
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.
Proposals
England
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.
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.
Never forget
your WHY
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.
Contact
Mary Lee Fay
National Association of State
Directors of Developmental
Disabilities Services
(NASDDDS)
703-683-4202
[email protected]
supportstofamilies.org