INDEPENDENT CHOICES: A National Symposium on Consumer-Direction and Self-Determination for the Elderly and Persons with Disabilities. Demonstrating Self-Determination: An Evaluation of Policy and Implementation Issues

Valerie Bradley and Sarah Taub
Human Services Research Institute

Basics of Self-Determination

  • People decide what they want
  • There is support to make decisions
  • There are real options to choose from
  • The process is simple and person-centered
  • With control comes responsibility
  • An approach, not a model, not a program

Antecedents Include...

  • Family support programs,
  • Personal assistance programs
  • Employment voucher innovations
  • Cash and counseling programs

It is About Changing Systems...

  • Shifting authority for decision making to the individual.
  • Changing the way supports are funded to give people direct control over dollars.
  • Changing the role of service providers, case managers and support staff.
  • Putting the person into the center of the relationship between the state and provider organization.
RWJ Sites Other States On The Move
Arizona New Hampshire California
Connecticut Ohio Colorado
Florida Oregon Idaho
Hawaii Pennsylvania Montana
Iowa Texas North Carolina
Kansas Utah Rhode Island
Maryland Vermont  
Massachusetts Washington  
Michigan Wisconsin  

Purpose of the Assessment

  • Demonstration projects in 19 states awarded grants by RWJF to the tune of $5M
  • Common elements and strategies including:
    • individually controlled budgets
    • supported planning processes
    • administration changes to make it work
  • HSRI examined impact of demonstrations over past three years

Guiding Questions

  • Did the projects meet their goals?
  • What actions did the projects take?
  • What obstacles or constraints were encountered?
  • What were the results of the actions taken?
  • What national policy issues must be addressed?

Information Collected

  • System-level analysis based on logic model
    • State and local context (mediating variables)
    • Actions taken and new structures put into place (independent variables)
    • Outcomes for participants and for the system (dependent variables)
  • Financial management study of selected states

Year Two Assessment Focus

  • Actions taken to engage self-advocates in the change process and the roles played by self-advocates nationally
  • Paths taken to resolve operational and funding riddles
  • Outcomes associated with systems change and the number of people supported
  • The extent to which the Demonstrations move beyond a limited "pilot status"
  • National policy implications

Financial Management Study

  • Looked at demonstration states using HCBS Waiver funds (KS, MN, MD, MI, UT, VT, WI)
  • Purpose: to compare traditional methods of financing with consumer-managed arrangements
  • Document how states are doing this, what works well, and what the challenges are

Components of Financial Management

  • Fund allocation and authorization of individual spending amounts--how funds are distributed by states to individuals, equitably and in accordance with formal rules
  • Rate/price setting--processes involved in establishing the amounts to be paid to providers, consumers, and families for various supports
  • Billing and payment--how invoices are prepared and submitted to payers; how payments are made, monitored, and kept within authorized limits
  • Employee administration--administrative tasks required of employers
  • Management information systems--automated systems that support financial and program operations
  • Resource requirements--are the workloads increasing, decreasing, or staying the same?

What changes are happening?

  • Funds are flowing through a mediating entity, not directly to consumers
  • Shift from retrospective payments to prospective rates or "ranges" of costs
  • Gradual movement away from advance payments and fixed contracts toward "open contracts"

Workload/Resource Issues

  • Formal risk reserves are not being established--savings immediately applied to urgent needs
  • Service coordinator workloads are increasing
  • Shift in employee administration responsibilities from providers to fiscal intermediaries
  • MIS needs increased--some projects have met these demands with automated systems but others still doing budgets by hand (uneven across states)
  • "Start-up" workloads are high (for service coordinators, administrators, financial managers, etc.)
  • Use of committees for budget review and authorization

What challenges lie ahead?

  • Making waiver funds work for self-directed and/or self-managed supports
  • Standardizing automated accounting and information systems within states (particularly in county-based states)
  • Further defining and establishing service coordinator roles and responsibilities
  • Expanding use of fiscal intermediaries with focus on consumer control

Points of Tension

  • How do we set personal budgets?
  • Who does the "broker" really work for?
  • Do brokers end up with more (not less) authority?
  • What about existing case managers?
  • Do we really need a "fiscal intermediary"?
  • For adults with disabilities, is this a person or family driven approach?
  • Where does his leave traditional providers?
  • Won't this cost more, not less?
  • How do we assure safety and well-being?
  • Can self-determination exist when another speaks or "stands in" for the person?
  • Have we made the process of self-determination too detailed with the wrong priorities?
  • How do we define the idea of want versus need in terms of developing a budget?
  • How do we ensure equity?
Finding Balance...
unavailable at the time of HTML conversion--will be added at a later date.

Implications for Further Reform

  • Support advocacy (family support councils, self-advocacy) and create a training network
  • Build on some "ripe providers"
  • Explore new service configurations
  • Build capacity of direct support staff
  • Encourage competition
  • Build community capacity
  • Give disenfranchised communities power over funding (also need competent brokers)
  • Communication/language is key
  • Information should go both ways
  • Have to support people to be present
  • Create a forum to discuss issues between families and individuals
  • Consider pooling funds in--especially in disadvantaged/diverse communities

Focus on Self-Advocates

  • We met with two self-advocates from seven states in Baltimore in October (MI, OR, MD, WI, MA, VT, UT)
  • We asked about self-determination in their state and what could be done to assure that self-advocates were involved in setting policy.

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
  • There are problems with the doing.
  • 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
  • People promote self determination but there is an expectation of failure. Agencies "set things up" for it to fail by making it too hard to do.
  • Professionals or staff not talking directly to us... talking to others instead of us.
  • 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

Need and Opportunity

"A service system for [people with disabilities] and others in need of support will have to be a system in constant change. It has to be continuously developed, if the 'customers' are not to be left behind and to become hostages of an outdated way of doing things."
Alfred Dam (undated), Denmark