Human Services Research Institute Webinar with Autism NOW June 28, 2011

8/6/2019 Human Services Research Institute Webinar with Autism NOW June 28, 2011

1/55

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

[email protected]

Working Toward

Sustainable Futures


2/55

www.theriotrocks.org

2Human Services Research Institute


3/55

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?



4/55

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



5/55

5

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. . .


6/55

6

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


7/55

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.



8/55

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



9/55

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.



10/55Human Services Research Institute 10

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


11/55Human Services Research Institute 11

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


12/55

Things

Have

Changed


Family Support Is Dead!

Long Live Family Support


13/55

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



14/55

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



15/55

Estimated State Budget Shortfalls 2012

FY 201066 states

FY201136 states

FY 2012 est.

45 states

.

The Center on Policy and Budget Priorities


16/55

Human Services Research Institute 16

Center on Budget Policy and Priorities, 2011 (http://www.cbpp.org/cms/?fa=view&id=711)


17/55

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.



18/55

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.



19/55

Human Services Research Institute 19Gary Smith, HSRI

Wait List

Increasing

Service Demand

Resources


20/55


Can this be efficient?

1952... 1962... 1972 ... !977...1982... 1987.. .1992... 1997.. 200220072012

CustomizedEmployment

Apartments


21/55


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


22/55

Lets ask people with disabilities


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


23/55

What To Do???

We cant stay on

this spot

We need to rethink what

we do affirm ourvalues but resolutely

search for value



24/55

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!



25/55

Sustainable

Futures

An action agenda anchored invaluesand

committed to making thechanges

necessary to secure the bestoutcomes

possible for people with developmental

disabilities and families.



26/55


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




Military families

Younger and older

support-givers Wide geographic diversity

Children and adults at homewith families

PolicyChallenges

Budget stress Accelerating service

demand


Workforce shortages

Continued push forcommunity integration,participation, contributionself direction.


27/55

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.



28/55

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).


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)


29/55

2. Hear Self-Advocates Overall

People want tolive the life they

want in thecommunity withthe support they

need. Just likeanyone else.



30/55

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.



31/55

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 ...)



32/55

Considering the Rub...

Who Decides What??

Family

Directed?

Self

Directed?

StateDirected?

ProviderDirected?

Case managerDirected?



33/55

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



34/55

Individuals

Community Government

A Three

LeggedApproach!

3. Rediscover Ourselves

and Our Communities



35/55

1stleg Government

A need to settle ona direction

A need for greater

efficiency



36/55

2ndleg Community

Enlisting community

businesses

Enlisting faith-based

organizations

Enlisting community

serving organizations



37/55



38/55

3rdleg

People Helping People

+ +Me =Me WeMe



39/55

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!



40/55

The General Approach


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


41/55

Human Service Cooperatives &

Peer Support?

In a cooperativeparticipants unite to

address common orindividual needsthrough mutual

support and/or jointaction.



42/55

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



43/55

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.


Human service cooperatives


44/55

Federated Human Service Coops

Several local HSC Companies have beensuccessfully implemented


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


45/55

Key Concepts:Low income Americans

Asset development

Matched savings accounts

An Added TwistIndividual Development Accounts


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


46/55


http://cfed.org/programs/idas/directory_search/

E h N t k


47/55

Exchange Networks


http://timeexchangenorthshore.org/


48/55


The Way Things Are


49/55


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


50/55


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_cS2Dw


51/55

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.



52/55


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




Military families

Younger and older

support-givers Wide geographic diversity

Children and adults at homewith families

PolicyChallenges

Budget stress

Accelerating servicedemand


Workforce shortages

Continued push forcommunity integration,participation, contributionself direction.


53/55

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



54/55

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.



55/55

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

Human Services Research Institute Webinar with Autism NOW June 28, 2011

Documents

Transcript of Human Services Research Institute Webinar with Autism NOW June 28, 2011