What Do People Tell Us About the Quality of Their

Supports?

American Association on Mental RetardationVal Bradley and Sarah Taub

Human Services Research InstituteJune 2, 2004

Philadelphia, Pennsylvania

QUALITYBEGINSWITH THE

PERSON

As Long Ago as 1970, Self-Advocates Told Us What They Wanted

• An apartment of our own, no coddling by staff• Right to move in together and have sex• More personal freedom • Leave the family home and live on our own• Wider range of job possibilities• Presence when decisions are made about us.

Malmo, Sweden1970

In the 1970s and 80s, People Coming out of Institutions Told Us How They Felt

• They were happier in the community• They could do more things for themselves

in the community• They could places like restaurants, to

church and to movies• They learned to do things they couldn’t do

in the community• They didn’t want to go back!

And Self-Advocates Have Told Us How They Feel About Self Determination

We need to define self-determination… We

know the principles but people don’t get it…

It’s problems with the doing

that trips people up

Self-Advocates Said...

That Self Determination means that...• I am a person like all people: My life is my own.

• I speak for myself… “Speak Up” “Stick up for myself”.

• 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.

• I am a person like all people: My life is my own.

• There is an awakening about self determination….

• Self advocates are participating on boards, committees and task forces locally and at the state level.

• Self advocates are becoming issues based and finding a voice…

• States are becoming more flexible in how money is spent

On a Positive Note:Self-Advocates Said...

They Also Said: There is Still Work to be Done...

• People don’t know what self determination is.

• Caseworkers don’t allow people to make their own decisions.

• Agencies say they believe in self-determination but then don’t want to give up the money (or the power)

• Agencies don’t want to get us the supports we want

Signs of Change in Performance Management

• No longer just better than the institution

• It’s about outcomes for people• Changes in experiences of

families and people with developmentaldisabilities

• Inclusion of self-advocates in monitoring

Inclusion

A Collaboration Between the Human Services Research Institute and the National Association of State Directors of Developmental Disabilities Services

Project Beginnings

• NASDDDS and HSRI collaboration• Launched in 1997• Seven field test states (plus steering

committee)• Many indicators covering many outcomes• Development of surveys

Participating NCI States

NDAK

HI

WA

OR

ID

MT

WY

ND

SD

NE

CAUT

NV

AZ

CO

NM

KS

OK

TX

MN

IA

WI

IL IN

MO

AR

MI

OH

KY

TN

MS

LA

AL GA

FL

SC

NC

VAWV

PA

NY

MEVTNH

MD

DC

DE

NJCT

MA

RI

PR

Orange County

What has NCI Accomplished?

• Nationally recognized set of performance and outcome indicators

• Surveys that states and everyone else can rely on

• State and national data that can be used for trends

How Are NCI data used?

• Setting goals and priorities

• Budget requests to Governor and legislators

• Points out problems

• Stakeholder advisory committees

(Quality Councils)

How are resultsshared?

• On state websites

• Presentations to staff, providers, community

• Summaries shared with families who filled out surveys (AZ)

• Simplified version of Consumer

Survey report for self-advocates (VT)

What Outcomes Do We Look At?

• Consumer Outcomes:

– Employment

– Community Inclusion

– Choice and Decision-making

– Relationships

We Also Ask Families What They Think

• Family Indicators– Information and Planning– Choice & Control– Access & Support Delivery– Community Connections– Family Involvement– Satisfaction– Family Outcomes

We Also Look At…

• Health, Welfare, and Rights– Safety – Health, Medications, Wellness (new)– Respect/Rights

• Staff Stability and Competence– Staff Stability – Staff Competence (new)

Consumer Survey

• 7917 surveys completed

• 67% of people interviewed were able to respond to Section I

• In many states, self-advocatedo the interviewing (PA, VT,KY, MD)

Place of Residence

0.0 20.0 40.0

0.9Nursing Facility

3.7Other

4.3Apartment Program

8.5Specialized Facility

9.9Foster Care or Host Home

18.6Independent Home or Apt

24.7Group Home

29.1Parent or Relative Home

Areas of Strength

• 92% of all respondents report that they have enough privacy

• over 90% of respondents report that support staff treat them with respect

• 94% satisfied with home• 96% satisfied with work/day program• Participation in community activities is

generally high, ranging from 69% to 96%

Areas for Improvement

• 77% of all respondents report that service coordinators get them what they need, compared with 90% in FY2001

• 48% of respondents reported “sometimes” or “always” feeling lonely

• only 52% of women had a GYN exam in the past year and 7% have never had one

What About People Who Have Individual Budgets?

How Many People Have Individually-negotiated Budgets and Fiscal Intermediaries?

1.9%

47.7%

50.4%

No IB or FI

IB Only

IB and FI

Where Do People With Individual Budgets Live?

30.3%

7.1%

21.3%

34.7%

6.6%

Group Home

Apartment Program

Independent Home/Apt

Parent/Relative Home

Foster/Host Home

Extent of Control Over Key Life Areas

0%

10%

20%

30%

40%

50%

60%

70%

80%

No IB or FI 14.0% 26.8% 14.1% 47.8% 61.3% 17.2% 13.3% 53.6% 6.8%

IB Only 16.5% 32.2% 13.8% 51.8% 71.8% 22.3% 13.9% 57.1% 19.3%

IB and FI 30.2% 45.9% 28.4% 60.2% 76.0% 25.5% 21.9% 64.1% 15.6%

Where

to live

Room-

mates

Support

staff at

home

Daily

schedule

How to

spend

freetime

Where

to work

Support

staff at

work

What to

buy

Case

manager

Comparisons in Living Arrangements Among People with and without Individual Budgets

and/or Fiscal Intermediaries

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

Group Home Apartment

Program

Independent

Home/Apt

Parent/Relative

Home

Foster/Host

Home

IB and FI IB Only No IB or FI

To What Extent Are Individuals with Individual Budgets and Fiscal Intermediaries

Included in Their Communities?

0%

10%

20%

30%

40%

50%

60%

No IB or FI 37.0% 36.3% 25.9%

IB Only 43.5% 35.6% 29.9%

IB and FI 48.1% 47.7% 32.2%

Integrated Sports or Exercise Clubs or Community Meetings Self-Advocacy Meeting or Event

Knowledge of Case Managers

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

Without IB 81.5% 74.4% 67.6%

With IB 89.6% 83.9% 76.0%

Knows CM CM gets needed services CM asks what's important

What Have We Learned Over the Past Few Years

• Beginning to look at trends over past three years

• Five states collected Consumer Survey data annually for three years– Connecticut– Kentucky– North Carolina– Pennsylvania– Rhode Island

CM helps get what person needs…

90% 88%83% 83%78% 78%

5 state average All state average

FY00 FY01 FY02

Staff Stability

35.2%41.7%

52.9%

35.8%

45.1%

31.2%

0%

10%

20%

30%

40%

50%

60%

1999 2000 2001

residential day

92.8%

93.6%

94.4%

FY00 FY01 FY02

Person is satisfied with home…

0%

20%

40%

60%FY00 FY01 FY02

Roommate Home staff Case manager

Person had input in choosing…

Important Next Steps• Place individual outcomes at the

center of the system

• Enlist assistance of consumers and families

• Identify key areas of performance

• Create a quality committee

• Make results available to everyone

For More Information

• Final NCI Reports for Phase IV (FY2002) are available on HSRI’s website: www.hsri.org

• Contact us with questions:– staub@hsri.org

– vbradley@hsri.org