The Future of Supportsfor People with Disabilities

Who will be the leaders of tomorrow?

And Where Will We as Leaders Be Leading Us?

To be a leader …

You need to know what needs to

change

“In the 1960s you treated us like plants. You fed us, clothed us, kept us warm,and wheeled us out to feel the sun.

In the ‘70s & ‘80s you discovered we could learn - and we were treated like pets. You taught us all types of tricks and we stood by your side.

But now it is the 1990s. We are not your plants. We are not your pets.

We are people like you and we want to be treated as people. We want the same opportunities as anybody.”

Dirk Wasano -- Hawaii Planning Council on Developmental Disabilities, from John Agosta

Christmas in Purgatory -Burton Blatt and Fred Kaplan; written and photographed in 1965

7

The Good News Is, Every Year Fewer People Live in Institutions

Source: UMN RTC/ICI

IN 2010: 31,101 in state ID/DDfacilities with 16 or more residents

11 States Have No Public Institutions

New HampshireD.C.VermontRhode IslandMaineAlaskaNew MexicoWest VirginiaHawaiiOregonMichigan

No Public Institutions

National Association of State Directors of Developmental Disabilities Service

In 2010, 178,097 individuals with DD were living in small, community-based settings (6 or fewer)This is over seventeen times as many people as were living in such settings in 1982 (10,255)

Sheryl Larson, Amanda Ryan, Patricia Salmi, Drew Smith, & Allise Wuorio; Residential Services for Persons with Developmental Disabilities: Status and Trends Through 2010. Research and Training Center on Community Living Institute on Community Integration/UCEDD

And … in 1982 the average # of people per ‘setting’ was 15.6;

In 1992 it was 5.9

By 2010 that number dropped to 2.45

Lakin, et al; Residential Services for Persons with Developmental Disabilities: Status and Trends Through 2008. Research and Training Center on Community Living Institute on Community Integration/UCEDD

Outcomes of 21 studies of change in Social, Communication, Self-Care/Domestic and Community Living Skills of Persons with Developmental Disabilities Moving from Institution to Community

Lakin, Larson, and Kim, University of Minnesota, Research and Training Center on Community Living, 2011

We are still way too comfortable with segregation

IF WE WOULDN’T TOLERATE THIS ..….

THEN WHY THIS?

Laurence Hunt

Even if it was Good, it Can’t Continue

• Average cost/person for state-operated training center = yr.

• Average cost/person for a group home is approximately $95,000/yr. (FY 2009)

In 2010, over 122,000people were waiting for residential services.

McNichol, Elizabeth, and Nicholas Johnson. Recession Continues to Batter State Budgets: State Responses Could Slow Recovery. Rep. Washington, D.C.: Center on Budget & Policy Priorities, 12/16/10. Print.

How Bad Is It?

Diane McComb, Delmarva Foundation

Will there be enough workers?

Weiss’s Prediction for the Future #1:

People and their families will be less willing to accept standard packages of services and will demand

quality supports that help them achieve lives of their own and self-selected goals

Martin Luther King Jr. said:

I Have a Dream …

He did not say, ‘I have an annual plan,

quarterly goals, and a big old case file to keep

track of it all’

People should have homes, not homelike environments:Home is a place where:

• You choose where you live

• You choose who you live with

• If someone asks, "Whose place is this?", people who live in their own homes say "mine" or "ours“

• The people who live there have keys (people who don’t, don’t)

But We’re Good People …

And we’re only doing what’s best for the people we support …..

So what’s wrong with that?

If I Was in Charge of Students’ Lives

Home is not a place where there are a bunch of rules that most people

wouldn’t stand for

No Pets

Support Models are Changing:

The day is rapidly approaching when people won’t accept congregate services and funding models will encourage individualized supports.

A recent survey of progressive service providers found that almost without exception, when offered options, no onechose to live in a group home or work in day programs/sheltered environments

We will stop wasting people’s time and making them accept services they don’t like in order to earn their way into something they choose

Weiss’s Prediction for the Future #2:

The Riot, HSRI, Oct. ’07 www.theriotrocks.org

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Butterworth, Hall, Smith, Migliore and Winsor. StateData: The National Report on Employment Services and Outcomes; Institute for Community Inclusion (UCEDD); University of Massachusetts Boston; Winter 2011

ARE WE MAKING HEADWAY ON EMPLOYMENT?

Number of People Served by DD Agencies and Number in Integrated Employment

2012 - Institute for Community Inclusion, University Center for Excellence in Developmental Disabilities, University of Massachusetts

Weiss’s Prediction #3:

More resources will be available for people living with their families and in their own homes

More and more people with disabilities are supported in their own homes or in family homes

An Emerging Paradigm: More Adults are Living with their Families

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Living with Family

Living in ResidentialPrograms

Lakin Residential Services Patterns and Trends 2010

Over half (58%) of all individuals with MR/DDreceiving publicly financed supports live in the home of a family member.

Five states reported that 70% or more of all persons receiving support resided with their families.

Slide: Nancy Thaler, NASDDDS

Family Support Services in the United States: 2008; Research and Training Center on Community Living, Institute on Community Integration University of Minnesota; May 2009

The Trend is Strongly Toward Supporting People in their Own Homes or Family Homes – Residential Supports are Not Going to be Realistic or Affordable (or desired)

Yet – we don’t know nearly enough about how to support

adults living with their families to assure BOTH have a good life

Weiss’s Prediction #4:

We will do for people what they want and ask for, rather than what licensing or other standards say are needed.

We will stop assuming that there is some relationship between the significance of your disability and where you have to live

We will stop making decisions about people’s lives based on openings or slots

What we ask …

What’s wrong with him?

How can we fix him?

Why isn’t she more like us?

What are we supposed to do with her if we can’t fix her??

David Pitonyak, The Importance of Belonging

What we should be asking: What is he good at;

what does she like?

What is frustrating this person?

What would he change about his life?

Does she have a life that is meaningful to her?

What are his dreams?

Who cares about her… who does she care about?

Can she tell us what she wants or needs … and are we listening?

Weiss’s Prediction #5:

We will finally figure out that it is not only unethical but downright illogical to respond to people’s attempts to assert a degree of control over their lives by imposing greater and greater amounts of power over them

• have impact on their environment,• have access to a range of meaningful

activities,• be productive• feel valued and empowered, • make choices, and • enjoy the same freedoms

to which others have access

All people have fewer behavior problems when they are able to:

Weiss’s Prediction #6:

We will recognize that quality of life has a whole lot more to do with personal relationships and being part of a community than it does with the ability to fold laundry, balance a checkbook, sort coins or set a proper table.

Weiss’s Prediction #7:

Society will be just as unwilling to tolerate the abusive treatment of people with disabilities as they are the mistreatment of others

We impose the most structure and most restrictions

on the people who have protested control most loudly and let us know most clearly that they want to be in charge of their own lives

We sometimes disrespect and mistreat people without even thinking about it ….

Weiss’s Prediction #8:

We will pay people who work in this field salaries that reflect the value that we place on this kind of work

In 2010 the average starting wage for direct support professionals was $11.95/hr. or $24,856/year

… in many areas, about the same as dishwashers and fast food workers

May 2011 National Occupational Employment and Wage EstimatesUnited States

Weiss’s Prediction #9:

We will realize that you can’t give what you don’t get

The Golden Rule of Human Services:

Staff Do Unto Others as the Administration

Does Unto Them.

Weiss’s Prediction #10:

We will recognize that loneliness may be the most debilitating disability of all and we’ll figure out ways to support our communities to embrace all of their members

We will get out of our own way and stop isolating people from family and interfering in people’s potential to form relationships

Football Wisdom ….

To have something to do… To have someone to love… To have something to believe in… To have something to hope for…

In life, there are four essential needs…

Lou Holtz addressing the Notre Dame football team, 2005

John Agosta, HSRI

We could take a tip from Copernicus

Copernicus asserted that it was the sun, not the earth that is at the center of the universe

The future puts not us at the centerof the “human service universe” but rather the people we support

Our job is to help people assume their rightful place at the hub of their own universe and support the discovery of their own power that awaits them there.