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5 Good Reasons Why You Should Consider Self-Direction

Post by: Marc Fenton

Self-direction, also referred to as participant-direction or consumer-direction, is an approach that helps aging adults and people with disabilities maintain their independence and stay in their homes and communities. With this approach, Medicaid recipients have more control over their approved services and supports. They hire service providers they want to work with and pay them using individual budgets that are available through a Medicaid waiver program.

Self-direction is based on the belief that people know their needs best and are in the best position to manage their services and service providers. Some people manage self-direction on their own. But many people have someone (usually a family member) who helps them make decisions and manage their service providers.

More than one million people in the United States are currently using self-direction, and new people are choosing this approach every day. Here’s why:


1. Self-direction is flexible

With self-direction, people work with their case managers to qualify for a set of services. Then they decide when and how they want their services delivered.

Instead of having a home care agency send a worker to your house for a 9:00 am to 5:00 pm shift, you can make your own schedule. You could hire someone to come in the morning for a few hours. You could hire someone else to come back after 5:00 at night. And you could have them tailor their services to your individual needs and preferences.

You can get even more creative than that. I know a young woman in Massachusetts whose family uses self-direction to get the support she needs to volunteer in the community, attend exercise classes, and receive training on new skills. That’s something she and her family wouldn’t be able to do with traditional home care agency services or a facility-based day program.


2. Self-direction lets you choose your service providers

Self-direction allows people to hire service providers to deliver their services and supports. You can hire workers you’re compatible with or workers who share your culture or interests.

For example, there’s a man in his 20s in Kansas who is autistic and passionate about music. His mother uses self-direction to hire other young people who love music to provide his services. He now gets his services delivered by people his age who also listen to and play music with him. This level of personalization is not available through a home care agency or a facility-based day program.

In some states, people can also hire family members to deliver services. Family members of aging and disabled individuals often have to quit their jobs because they simply can’t work full time and support a loved one. Self-direction can turn a challenging situation into a win-win situation. People get their services provided by a family member who knows and loves them. And family members earn income for the important services they’re already providing. Being able to hire family members is also very important in rural areas where there are not enough home care workers or professional home care agencies.


3. Self-direction is cost effective

People who use self-direction are given a budget and are in charge of their money and what they spend it on (with restrictions). People manage their budget to pay their service providers. Studies show that people who use self-direction spend their money wisely—paying for the services that give them the most benefit. People use their budgets to get what they need, not simply to spend their money.

Self-direction can also help individuals get more value for their money. For example, if you hire a home care worker through an agency, you may pay the agency $25 per hour, while the worker only receives $15 per hour. With self-direction, you could pay your workers $15 per hour directly (or more) and use the money you “saved” to pay for additional services.


4. Self-direction improves quality of life

Several surveys have been done in which people who use self-direction are asked, “Are you happy with self-direction and would you recommend the approach to a friend who has similar needs?” In nearly all of these surveys, more than 90% of people say yes. Individuals, their families, and their service providers all report high levels of customer satisfaction. Studies also show that, with self-direction, there are fewer hospital stays and lower rates of nursing home use.


5. Self-direction gives more power to the people

Self-direction puts control back in the hands of individuals, instead of home care agencies or government agencies. It’s a fundamental change in the way people on Medicaid are directing their services. People from all walks of life self-direct their services and supports. Children, adults, veterans, and the elderly use self-direction. People with physical or intellectual disabilities and people with mental health issues use self-direction. And people who live in cities, suburbs, and rural communities in all 50 states use self-direction.

Because self-direction is a Medicaid program, each state makes its own rules for how it works. To learn more about self-direction, ask your case manager. Better yet, ask your case manager if you can speak with someone who is already self-directing his or her services. As with most things, there’s nothing like talking to someone who has first-hand experience.

Of course, self-direction isn’t for everyone. There are risks involved. Individuals and their families may not want to take on the extra effort, management, and decision-making that self-direction requires. But self-direction is working well for a lot of people. And maybe it can work for you too.


Marc Fention is the founding director of Public Partnerships LLC, a PCG Company. A leading expert on self-direction, Marc has more than 40 years of experience serving health, human services, and Medicaid agencies in 30 states.

Necessity is the Mother of Invention

Post by: PCG Public Partnerships

Since 2005, The Chanda Plan Foundation has promoted wellness and healing to persons with physical disabilities through integrative therapies including acupuncture, massage, adaptive exercise and adaptive yoga. Founder Chanda Hinton Leichtle realized the benefits of integrative therapies when faced with her own mortality at age 21.

Through her determination to help other persons with physical disabilities, Leichtle has worked with Colorado policy makers to create the SCI Waiver, which will evaluate the cost efficiency and the value of integrative therapies for persons with physical disabilities over an eight-year span (2012-2020). Based on the data, Colorado could choose to cover integrative therapies, providing better health outcomes at low costs. The legislation could serve as a model and be used nationally. For Leichtle, this is far bigger than her. She says, “I can’t wait to see the impact we will make on our community and the opportunity this model will offer to others because we made sure to make it possible to replicate.”

Persons with physical disabilities can increase range of motion through massage therapy, increase blood flow and minimize the risk of blood clots. Acupuncture can aid in the recovery of a person with a physical disability by stimulating the nervous system according to practitioner Stephen Corsale.

The Chanda Plan Foundation is planning to move to a facility eight times larger than their current location. It is hoped that the new facility will garner more than 200 unique persons with disabilities in the first six months. Persons with physical disabilities will have more services to choose from, as the foundation seeks new practitioners to offer more services.

The foundation has collected $3.5 million of their $4 million goal to complete the building. Most of the money has come from grants and donations from the Colorado Health Foundation, the Christopher and Dana Reeve Foundation and the Boettcher Foundation. Learn more about this non-profit below: http://www.chandaplanfoundation.org/

Donate to the building fund here: https://commitchange.com/co/lakewood/chanda-plan-foundation/campaigns/a-capital-campaign

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”.