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Penetration Rates in Participant Direction

Post by: Marc Fenton 

We have long observed that there are different penetration, or utilization rates in participant direction across the country. We know there are many reasons for this: state program priorities, budgets and waivers for new services, impact of advocates, legislative politics, state leadership, But we also know that there are differences among populations who are served.  In a recent international conference presentation Val Bradley, President of the Human Services Research Institute in Cambridge, MA, presented national data on penetration rates for participants with developmental and intellectual disabilities.  Val stated that these rates have plateaued at 8% to 10% nationally. Looking at the data that PCG-Public Partnerships has collected from various states shows that the population with DD and IDD is usually in the single digits. In contrast, the penetration rates of those with disabilities and problems of aging are much higher -up to 40% to 45%.  

The Wyoming RFP we recently received calls for a proposal to serve both populations. We are currently serving 343 participants in the DD/IDD waiver, or about 15% of those eligible.  For the long term care waiver serving elder and disabled the population served is 1542 or a penetration rate of 41%.  This is a state that has been prominent in offering self-direction as a choice to both populations.

In a recent conversation with Nancy Thaler, the new PA Assistant Secretary of the Office of Persons with Disabilities (OPD), agreed with my observation of different penetration rates and offered a clear and insightful reason why. “People who are aging or disabled are looking to maintain their independence as they age; they don’t want to lose any elements of independence.  Self –direction is an easy sell because it promises them continued independence” she observed. “People with intellectual and developmental disabilities are usually receiving services, often substantial services, and they and their families feel they are at risk of losing services if they self-direct.  It is a risky sell.”  I think she is right.

Thoughts on Self-Direction

Post by: David Horvath

 What does it mean to self-direct your services and supports?  Two words come to mind: “Choice” and “Control”.  You have choice over the services you purchase, who provides them, and how much you pay for them.  You have control over when and how those services are delivered.  You are in the driver’s seat.  You call the shots within the program rules set by state and federal agencies.  Our job is to support you.  Much of what we do, such as paying taxes on your behalf, goes on behind the scenes.  If we do our job well you might not even notice us.  That’s how it should be.  We want you to be able to stay focused on living your life.  

Self-direction is also a means to an end.  It’s a way for you to be able to live the life that you want to live on your own terms as much as possible.  The people who designed self-directed programs wanted you to be able enjoy the freedom, authority, support, and responsibility that comes with managing your own life.  For some people, this means deciding what time to get out of bed, take a shower, and eat meals with the help of paid employees or natural supports.  For others, this means deciding how much to pay employees, whether to hire family members, or whether to save funds for a big purchase that will increase independence.  For all, it means greater “Choice” and “Control”.