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8/6/2019 Human Services Research Institute Webinar with Autism NOW June 28, 2011
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THE NEXT GENERATION OFFAMILY SUPPORT SERVICES
John Agosta, Ph.D.
Human Services Research Institute
7420 SW Bridgeport Road (#210)
Portland, OR 97224
503-924-3783
Working Toward
Sustainable Futures
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www.theriotrocks.org
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Topics
A bit of background andhistory
Things have changed
Facing the challenge to build a Sustainable Future
Three things we can do
What are YOU going to do about it?
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Most people with developmental disabilities
live at home with families (especiallychildren).
Prior to the mid 1970s families receivedlittle, if any support.
Families had two choices: out of homeplacement or care at home with no support.
The first state family support program wasestablished in PA in 1972.
Most states followed the lead in the 1980s.
Programs primarily focused on childcentered services .
Some History
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In the beginning
Principles of Family Support
Family centered
Family driven
Family controlled
Convenient andaccessible
Culturally competent
Actively reaching out Available through
developmental phases
Respectful of familyexpertise
Flexible
Family
Support
Shall Be. . .
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In the beginning
Goals of Family Support
To keep families together
To enhance capacity and
independence To improve the familys quality of life
and inclusion in their community
To enhance the availability of paidand natural supports
To facilitate connections amongfamilies
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In the beginning
Where we ended up Family support means
different things to differentfamilies.
Family support programs makeuse of structured services, as wellas informal or natural supports. A few still offer cashassistance
Family support promotes family empowerment themes
The idea is to provide whatever it takes for families ofpeople with disabilities so that they can live as much likeother families as possible.
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By 1995-2000
Every state eventually indicated thepresence of a family support program.
Over 30 states had passed family supportlegislation.
Several states offered some form of cashassistance (e.g., MI, IL, KA, NJ, OR, MA, LA, IA).
States varied greatly in program design.
There was a great reliance on state revenueonly.
BUT things had already stalled considerably
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Things Have Changed
Medicaid is increasingly in play. Help is defined as whatis Medicaid reimbursable.
Family Support is not a reimbursable service.
Not all children qualify.
Focus is on the Medicaid beneficiary, not the family.
Increasingly we focus on adults at home, not justchildren.
There is confusion about what is family support andwhat is in home support
There is confusion between self-direction and familydirection.
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599,152
350,000
450,000
550,000
1 2 3 4 5 6 7 8 910
Trends in Residential Service Use in the
United States by Type (2000-2009)
Family Home - Total
32,909
29,608
57,439
159,593
237,920
0
50,000
100,000
150,000
200,000
250,000
2000 2001 2002 2003 2004 2005 2006 2007 2008 2009
Pe
ople
ICF/MR - Institution
Nursing Home
ICF/MR -Community
HCBS Residential
HCBS -Family Home
Lakin, 2010
48% ofHCBSRecipients
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Adding it all up what are the impacts
on individuals and families?
Time spent on system requirements and demands
Contributionsof individuals
Contributionsof family
members
Contributionsof paid
staff
Requirements
Met+ + =
Familymembers
spend time onthe individual
or other things
Individualsspend time on
livingtheir life
Contributionsof paidstaff
The Life IWant+ + =
Time spent on living life
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Things
Have
Changed
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Family Support Is Dead!
Long Live Family Support
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Next Generation ofFamily Support Recipients
Children and adults athome with familiesFamily members who providesupport
Parents, brothers & sisters,extended family
Parents with disabilities
Families of ethnic origin
Military families
Younger and older support-givers
Wide geographic diversity
Next
Generationof Family
Support
Recipients
Seeking support.Recipients have high
expectations:
Individual self-direction
Family directed services
Cultural competence
Emphasis on community
integration
Flexible supports to
accommodate needs overfamily lifespan
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Challenges Faced By Policy Makers
Budget stress
Accelerating service
demand
Reliance on legacy andinefficient systems
Workforce shortages
Continued push for
community integration,
participation,
contribution self
direction.
DecisionsMade
Future
System
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Estimated State Budget Shortfalls 2012
FY 201066 states
FY201136 states
FY 2012 est.
45 states
.
The Center on Policy and Budget Priorities
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Human Services Research Institute 16
Center on Budget Policy and Priorities, 2011 (http://www.cbpp.org/cms/?fa=view&id=711)
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Financial Conditions In The States
Total inflation-adjusted publicI/DD spending declined in the
United States in 2009.
This is the first such decline sincewe began collecting federalspending data in 1972, state by
state data from 1977, and
probably since the greatdepression.
Source:Braddock, D., State of the States in Developmental Disabilities, 2010, preliminary.
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Service Demand
Is Going Up!
Demand for publicly-funded developmental disabilities services isgrowing nationwide.
It is increasing at a rate greater than population growth alone.
This increase in service demand is driven by:
People living longer or surviving trauma
Aging baby boomers
Turnover among individuals receiving services is reduced so thatthere is less capacity to absorb new demand
There is a growing number of individuals who live in households withprimary caregivers who are themselves aging.
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Human Services Research Institute 19Gary Smith, HSRI
Wait List
Increasing
Service Demand
Resources
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Human Services Research Institute 20
Can this be efficient?
1952... 1962... 1972 ... !977...1982... 1987.. .1992... 1997.. 200220072012
CustomizedEmployment
Apartments
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Human Services Research Institute 21
In the 1960s and earlier we were treated likeplants. You fed us, clothed us, kept us warm,
and wheeled us out to feel the sun.
In the 1970s and 80s you discovered we could be taught - we could
learn - and we were treated like pets. You taught us all types of tricksand we stood by your side.
But now. Here we are. We are not plants. We are not your pets.
We are people like you and we want to be treated as real people. We
want the same opportunities as anybody.
Dirk Wasano - Hawaii Planning Council on Developmental Disabilities
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Lets ask people with disabilities
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Thank you for everything
that youve done for allthe services that there are
But what you built, wedont want.
Rebecca CokleyAdvisor to the Secretary
US Department of Education
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What To Do???
We cant stay on
this spot
We need to rethink what
we do affirm ourvalues but resolutely
search for value
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3 Things We Can We Do
To Develop a Sustainable Future
1. Reconsider what is
meant by familysupport
2. Hear selfadvocates3. Rediscover ourselves
and our communities.
It cant ALL be about Medicaid!
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Sustainable
Futures
An action agenda anchored invaluesand
committed to making thechanges
necessary to secure the bestoutcomes
possible for people with developmental
disabilities and families.
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Human Services Research Institute 26
ValuedOutcomes
forindividuals,families and
systems
Next GenerationPolicies & Practices
Reconsider what is meant
by family support
Emphasis on:
o individual and family
leadership
o considering the multiple
facets of lifeo cultural competence
o systems efficiency
Hearing self-advocates
overall
Emphasis on effective use
of community assets
Emphasis on blending
together multiple
resources
Next Generation ofFamily Support Service
Recipients
Family members whoprovide support
Parents, brothers & sisters,extended family
Parents with disabilities
Families of ethnic origin
Military families
Younger and older
support-givers Wide geographic diversity
Children and adults at homewith families
PolicyChallenges
Budget stress Accelerating service
demand
Reliance on legacy andinefficient systems
Workforce shortages
Continued push forcommunity integration,participation, contributionself direction.
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1. Reconsider what is meant
by Family Support
Family support consists of a variety ofservices or supports, including cash assistance,professionally provided services, in-kind support
from other individuals or entities, goods orproducts, or any combination that are provided to familieswho have minor or adult members with disabilities living inthe familys home. (Beach Center on Disability, 2006)
The idea is to provide whatever it takes for families ofpeople with disabilities so that they can live as much like otherfamilies as possible.
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Potential HCBS ServicesIn Home Supports
In-Home Supports are defined here as services
for individuals who are living at home with family
members (i.e., immediate or extended family).
Human Services Research Institute 28
Examples:
Service planning
Individual Supports Day
Individual Supports NightSpecialized Equipment & Supplies
Environmental Accessibility Adaptations
Participant-Determined Goods & Services
Supports for Participant Direction
Fiscal Management Services
MentorshipPeer Support
Network Support & Organizing Service
Respite Care (Center-Based)
Respite Care (Home-Based)
Family/Caregiver Training
Family-centered planningService coordination
Cash assistance
Professionally provided services
Information and training
In-kind assistance
Peer mentoring / family-family supportAssistive technology
Home modifications
Goods or products
Emergency assistance & crisis support
Any combination of resources
strategies designed to ensure that familieshave access to person-centered and family-
centered resources, supports, services and
other assistance. These strategies are directed
to the family unit but ultimately benefit the
individual.
Family Support Working Definition(Wingspread, 2011)
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2. Hear Self-Advocates Overall
People want tolive the life they
want in thecommunity withthe support they
need. Just likeanyone else.
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Self-Advocates
Say...
That Self-Determinationmeans that...
I am a person like all people. I make my own choices.
I am the boss of my own life.
I make my decisions in my own life. I do for myself and not depend on others so
much.
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When We Ask Self-Advocates...
What or who helps you to be in controlof your life?
Very quickly someone will say... MyParents. And many will agree.
What or who keeps you from being incontrol of your life?
Very quickly someone will say... MyParents. And many will agree.
(In New Hampshire, Alabama, Mississippi, Texas, Oregon, Colorado, North
Carolina, Arizona, Idaho, Montana, Virginia, Missouri, Montana ...)
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Considering the Rub...
Who Decides What??
Family
Directed?
Self
Directed?
StateDirected?
ProviderDirected?
Case managerDirected?
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AGE of the PersonWith Disabilities
Families can help -- Strong, positive support -- Self-determined individuals
Families make mostimportant decisions
Self-advocates make
decisions about their life.
Family-Directed Supports Self -Directed Supports
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Individuals
Community Government
A Three
LeggedApproach!
3. Rediscover Ourselves
and Our Communities
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1stleg Government
A need to settle ona direction
A need for greater
efficiency
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2ndleg Community
Enlisting community
businesses
Enlisting faith-based
organizations
Enlisting community
serving organizations
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3rdleg
People Helping People
+ +Me =Me WeMe
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People Helping People
Peer Support Networks
Human service Cooperatives
Exchange Networks
Purchasing alliances
Utilizing community assets
Contribution to community
Individual development accounts
Talk about Match! States match state dollars forMedicaid reimbursement.
For the price of running a peer cooperative, considerthe match returned as people help one another!
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The General Approach
Human Services Research Institute 40
Personal and FamilyOutcomes
Mutual support tomeet family needs.
Improved health and
well-being. Asset development
System Outcomes
Efficient use of public
resources Added resources to
Contributions tocommunity
Staff &
Leadership
Member
ParticipationComponents
Peer Support
Exchange NetworksHum Serv Cooperative
Purchasing Alliance
Community Assets
Community Contribution
Indiv Dev Accnt
Member NeedsSupport
Asset Development
Health & Well Being
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Human Service Cooperatives &
Peer Support?
In a cooperativeparticipants unite to
address common orindividual needsthrough mutual
support and/or jointaction.
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Peer Support
Peer Support Networks are not
meant to take the place ofpublic services
They are intended to generatecomplementary supports within communities
Participants unite voluntarily to addresscommon needs
A coordinator is needed to advise and organize
the Network, though it is shaped by needs andpreferences of its members
Participants help one another by offeringmutual support and sharing resources
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HSC Companies are recognized bythe Federated Human ServiceCooperative
The goal is to assist in the creationof Human Service Cooperatives and other self directed companies.(See http://www.federatedhsc.coop/)
This entity develops and certifies local cooperatives directed byindividuals and families who use disability services .
Once certified, a cooperative operates as a provider .
This type of cooperative is built on partnerships developed betweenagencies and community-service organizations in the public andprivate sector.
These partnerships create a responsive network to offer self-directedservices addressing member needs.
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Human service cooperatives
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Federated Human Service Coops
Several local HSC Companies have beensuccessfully implemented
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Arizona Autism United, (AZA United) Phoenix Arizonahttp://www.azaunited.org
Arizona Service Co-op Enterprise, (ASCENT, HSC), Flagstaff Arizona
http://www.ascenthsc.org
Inspire, HSC, Phoeinx, AZ, http://inspirehsc.org
Freedom Co-op, Memphis TN
Keep Marin Green Cooperative; San Rafael, California
Total Link 2 Community Cooperative, (Total Link 2); Northbrook Illinois
Community Choices Cooperative, Champaign, Illinois
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Key Concepts:Low income Americans
Asset development
Matched savings accounts
An Added TwistIndividual Development Accounts
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http://cfed.org/programs/idas/
Purchase a first home
Pay for post secondary education ortraining, or
Expand or start a new business
An average of 3:1 matching
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Human Services Research Institute 46
http://cfed.org/programs/idas/directory_search/
E h N t k
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Exchange Networks
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http://timeexchangenorthshore.org/
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Human Services Research Institute 48
The Way Things Are
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The Way Things Are
Medicaid Money is dropped intoisolated households.
Dependency onMedicaid
Isolation
Failure to build culture& capacity to increaseopportunity for mutualsupport and use ofcommunity resources.
The Way Forward
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The Way ForwardMedicaid works together with mutualsupport and use of community assets.
Reliance on multiple
sources of support
Kinship
Establish a culture &capacity to increaseopportunity formutual support anduse of communityresources
Purchasing alliance.
Network
d d i
http://www.google.com/imgres?imgurl=http://server23.lfchosting.com/gri/images/coalitionpartners/USChamber.gif&imgrefurl=https://server13.lfchosting.com/grassroo/wedecide.asp&usg=__odB1EoRBcXOeuDlIFkkSynDAdcg=&h=252&w=252&sz=10&hl=en&start=21&sig2=f01wXE9haA62MfQa-4D9bQ&um=1&itbs=1&tbnid=rkBf3ZSUwaqloM:&tbnh=111&tbnw=111&prev=/images?q=chambers+of+commerce&start=20&um=1&hl=en&sa=N&rlz=1T4ADFA_enUS378US379&ndsp=20&tbs=isch:1&ei=Py3rS4fVNoH8tQPm_cS2Dw8/6/2019 Human Services Research Institute Webinar with Autism NOW June 28, 2011
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Two Needed HCBS Services
Peer Support Network Organizing provides assistance and resources
to service recipients living at home with family members or on theirown, or their caregivers (e.g., family members, but not direct supportstaff employed by provider agencies) who work together to meetcommon service related goals for individuals. The network may bedesignated as a corporation or may be less formally structured. The
structured, scheduled activities provided by this service emphasize theopportunity for individuals and their caregivers to support each other inthe use and expansion of the skills and strategies necessary forindividuals to live successfully in the community. Activities may also bedirected at maximizing use of natural supports and supports availablefrom community serving organizations and businesses.
Peer Support includes person centered services that are offered toservice recipients primarily by others who are or have been servicerecipients, or have a developmental disability.
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Human Services Research Institute 52
ValuedOutcomes
forindividuals,families and
systems
Next GenerationPolicies & Practices
Reconsider what is meant
by family support
Emphasis on:
o individual and family
leadership
o considering the multiple
facets of lifeo cultural competence
o systems efficiency
Hearing self-advocates
overall
Emphasis on effective use
of community assets
Emphasis on blending
together multiple
resources
Next Generation ofFamily Support Service
Recipients
Family members whoprovide support
Parents, brothers & sisters,extended family
Parents with disabilities
Families of ethnic origin
Military families
Younger and older
support-givers Wide geographic diversity
Children and adults at homewith families
PolicyChallenges
Budget stress
Accelerating servicedemand
Reliance on legacy andinefficient systems
Workforce shortages
Continued push forcommunity integration,participation, contributionself direction.
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What Are You Going To
Do About It? What traditions,
commitments and vision
define us?
What assets can wecount on and leverage?
What alliances canwe forge?
What opportunities will we
create?
If I am only for myself,who is for me?
And if I am only formyself, what am I?
And if not now, when?
Rabbi Hillel
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Concluding Thoughts
Change imposes choice.
Choice imposes ambiguity.
Ambiguity promotes discussion.
Discussion promotes deliberation.
Deliberation forms opinion.
Opinion leads to action.
Lets Agree to Change.
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A service system for [people withdisabilities] and others in need ofsupport will have to be a system inconstant change. It has to be
continuously developed, if the'customers' are not to be left behindand to become hostages of anoutdated way of doing things."
Alfred Dam (undated)Denmark
Need and Opportunity