Frontline Initiative: Making Direct Support a Career

People have the Power: Empathy, Collaboration, Transformation

Author(s)

Marian Frattarola-Saulino, with Robert Bilbrough, C. L. Manning, Jessica Clark, Kim Cowley, Rue Kennedy, Dorinda Clark, Kathy Perry, and Rachel Milano-Davis are from Values Into Action in Pennsylvania.  Learn more about Values Into Action

Marian can be reached at marians@viapa.org  ​

Personal transformation can and does have global effects. As we go, so goes the world, for the world is us. The revolution that will save the world is ultimately a personal one.

~ Marianne Williamson

As a professional in the disability services community systems I [Marian] have been fortunate to learn from people with disabilities, their families and allies, including their direct support professionals (DSPs). The most meaningful lessons were those that exposed the trauma of isolation, separation from family, and loss of control over the basic aspects of life. Luckily, I found the calling, the energy, and the co-conspirators to translate those lessons into organizational approaches that tip the power toward those using services and the people working closest to them. This is the work that we do in Values Into Action. It began with an insight that began while providing direct support. It led to co-founding a service organization. Our organization strives to genuinely partner with people who accept supports from our organization. We seek to include all stakeholders on the decisions that impact them.

Sandra (sunrise 2/2/66 and sunset 7/7/16) never lost sight of her best life. With Stacie, she followed where her dreams led and lived life her way.

Epiphany from working in direct support

I was 21, working in a group home where eight women lived. It was in that home that I witnessed firsthand all of the women’s struggles to gain control in their lives. Some wanted to spend their money. Others, to eat what and when they wanted. All of them wanted to experience the fullness of intimate love. All wanted authentic friendships. All wanted to develop love and friendships in their own way.

My epiphany came while I was implementing a behavior support plan. I found myself restraining an older woman named Mary. I cannot recall why. I’m sure it was for some minor misstep of some nonsense expectation that we had for her. In these moments of her crying and struggling to free herself, I realized the significance of my actions. I was able to literally hinder her freedom. I had taken on the institutional authority given me by my job title. I realized an important message: Mary’s (and other oppressed people’s) behavior was their struggle to become unrestrained. Her struggle was her only way of claiming her rightful power in a lifetime of protest. This message resonated with my own desire to acknowledge my power and sense of purpose.

I never again used restrictive practices. Over the next several years, I learned with Mary. We worked together to re-design her support plan. We made it better reflect how she wanted to live. Both of us grew with these experiences. She eventually moved from the group home to her own apartment. She was one of the first people in the local service system to control her services within an agency context.

As I worked my way into leadership roles, it was always with deference toward those who used services and their DSPs. I try never to forget where I came from. I try to always hold the memories of Mary close. Many of us who are involved with the disability services system have known for a long time that the power must shift and what we must do to accomplish this. Yet we only go so far as a system. We stop well before we actually enable people who use services to be involved in every aspect of their own decision making. We stop before the decisions that are uncomfortable, maybe even unsafe. What we say does not align with what we do. Maybe it is because we do not see how important it is to respect the autonomy in each of us as human beings.

Emmanuel has a job he loves.

Creating Values Into Action for collaboration and transformation

These lessons led to the creation of Values Into Action with trusted colleagues. Values Into Action was incorporated in 2005 to be about people, not programs. No buildings. No group homes. Ever. No top-down organizational hierarchy. People and their DSPs are at the top of the chart on paper and in practice. We partner with more than 700 people every day in two states who are using a variety of services. No two stories are the same, but the principle of power sharing is consistent. We believe this is what an organization in our field should be. We are a community of like-minded people with shared values and vision. The values and vision guide and inform everything we do.

The founding principle of our organization is the concept of co-production of services.

Co-production is not new. It has its roots in the U.S. civil rights movement.  Co-production compels the active involvement and participation of the people using social services and those they choose to assist them. Together, they design, deliver, and evaluate those services. While co-production is similar to “self-directed" services in the disability service systems, it extends beyond assisting people to self-organize and direct. “Co” requires input from people who deliver services and people who have been seen as “recipients” of them. Both are essential. The relationship is collaborative.  Person-centered planning, practices, and approaches are not always easy, but they are very important for successful partnering with people who choose to accept services and their families. We believe they are the ultimate form of respect for all people involved.

Arnstein, Sherry R. "A Ladder of Citizen Participation," JAIP, Vol. 35, No. 4, July 1969, pp. 216-224

Co-production requires input from people who deliver services and people who have been seen as “recipients” of them. Both are essential. The relationship is collaborative.

Everyone is seen as a leader in this organization. Every one of us in formal leadership positions has worked in a position of direct services. We draw on what we have learned. We continue to learn from financial and services perspectives, but mostly from our direct experiences in support of others. One thing remains clear. We try to treat everyone—people with disabilities, their families and their DSPs—as the experts of their own lives. This is not only the right thing to do; it is the only way to do it. We envision and lead an organization where people themselves decide the expertise they need to build the life they want. For example, Bob who accepts support with us says, “I like that I can select and de-select my staff and that I am in charge of my schedule and my life. I don’t like staff trying to tell me otherwise.” Pam and her team collaborate with finance team members to spend her funding responsibly on things she needs for her home. Kim, a DSP in partnership with Jessica says, “The person’s choices are most important. Framing questions is important when supporting someone so they can best share their thoughts and wishes, which then inform their decision.” Mr. C. L. is a DSP in partnership with Bob. He states, “I am blessed to have the opportunity to work directly with Bob and Dorinda [who provides supervision to Mr. C. L.]…I am respected by them both and I have been an integral part of the decision-making process.”

Erin, who receives services from Values Into Action, presenting at PATH PEAL Conference.

How person-centered practices are used as we support our DSPs

DSPs are included in every decision that affects them. They provide input on who they work for and their work schedule. They have input when changes to health insurance occur. They offer input when we change policies and practices, like mileage reimbursement and the use of technology for support. Kim also shares, “I feel like a very important part of the organization as I know my input matters. When sharing feedback and making suggestions, I feel like an equal and not like I am on the bottom of a totem pole, which I have experienced in other jobs. I know I am valued by the people and families I work for. They take my ideas seriously.”

Our Culture and Talent Team, led by Rachel, sees its role as “providing a participatory environment where all voices are represented in organizational decisions and planning.” This team is well integrated in the day-to-day details of co-produced services. Engaging all stakeholders in decision making does not mean we get it right all of the time. We don’t. We don’t shy away from the mistakes we make. We see them as opportunities to learn together. That means we are at an advantage. By considering people’s aspirations, needs, and preferences first we find ways to make the regulations and rules work for them. We share responsibility for reaching the aspirations of those who accept our support. We appreciate the input of all who know and care about the person. Within a trusting context, we can be more comfortable taking risks and accepting responsibility when things don’t go as planned. Rue, another DSP says, “I like that I see myself as an equal with all other employees, no matter what their title is, including the Executive Director. All opinions are heard, appreciated, and respected. No one’s feedback goes unnoticed. I know my supervisor is there for me if I need to reach out for support.”

Beau Biden (2/3/69-5/30/15) had the honor of meeting Jessica on a flight to California in 2011, and he said so himself. Inspired, Jessica then went on to present at the International Initiative on Mental Health and Disability Leadership Exchange and Network Meeting.  We’re sure Beau was equally inspired by Jessica as he kept his promise to sign and return this picture to her once they both returned home.Jessica says it’s one of her most prized possessions.

Embracing new challenges to co-create new solutions

During the COVID-19 pandemic, co-production is needed now more than ever to ensure all of us stay as healthy and safe as possible. What we have already learned is that the control people have over their lives makes all the difference. People with disabilities, their families, and staff are making decisions about work schedules. We use remote versus in-person support when possible. Jessica shared about leading her own services during the pandemic, “I make my own decisions. I have things that are important to me, like choosing my DSPs and deciding what each day will look like when staff are with me. Staff need to respect me and my wishes. We are partners while working together.” Jessica is clear about how she relies on her supporters to help her think through options. Even when they may not agree on the decision she makes, they respect her choices.

In many ways, the pandemic has strengthened our community. We are using this time of physical distancing to explore new ways of communicating. We are working together to co-produce solutions that will keep everyone as safe as possible and carry us to our new, interdependent future. One of the ways we keep connected is a weekly webinar. All stakeholders are welcomed and ideas, concerns, and solutions are shared. A result of this collaboration, a Resource Guide has been created that everyone uses  to stay aware, engaged, and included in this new way of life.

As we head into the future our hope is that each of us, no matter our role, seek every opportunity to embrace the epiphanies.