What Do People Tell Us About the Quality of Their Supports? American Association on Mental Retardation Val Bradley and Sarah Taub Human Services Research Institute June 2, 2004 Philadelphia, Pennsylvania QUALITY BEGINS WITH 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, Sweden 1970

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.

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

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 developmental disabilities 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 NH WA ME VT AK ND MT ND MA MN OR WI NY ID SD RI MI WY CT PA NJ IA NE OH DE NV IN IL DC UT WV VA CO MD CA KS MO KY NC HI TN OK SC AZ NM AR Orange County MS AL GA LA TX FL PR

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 results shared? 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-advocate do the interviewing (PA, VT, KY, MD)

Place of Residence 0.9 Nursing Facility 3.7 Other 4.3 Apartment Program 8.5 Specialized Facility 9.9 Foster Care or Host Home 18.6 Independent Home or Apt 24.7 Group Home 29.1 Parent or Relative Home 0.0 20.0 40.0

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?

Where Do People With Individual Budgets Live?

Extent of Control Over Key Life Areas

Comparisons in Living Arrangements Among People with and without Individual Budgets and/or Fiscal Intermediaries

To What Extent Are Individuals with Individual Budgets and Fiscal Intermediaries Included in Their Communities?

Knowledge of Case Managers

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% 1999 2000 2001 0% 10% 20% 30% 40% 50% 60% 1999 2000 2001 residential day

Person is satisfied with home… 94.4% 93.6% 92.8% FY00 FY01 FY02

Person had input in choosing… FY00 FY01 FY02 60% 40% 20% 0% Roommate Home staff Case manager

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