In a positive step forward for the state, Pennsylvania Governor Tom Wolf recently announced the closure of two of the remaining four state centers for people with intellectual and developmental disabilities (I/DD) within the next three years. However, many residents of the communities nearby these centers — Polk and White Haven — have opposed the closings. At a recent community hearing in White Haven, our member Robert Zotynia and board member Marian Frattarola-Saulino testified in support of the closures of both centers, and helped to educate the community about self-direction.
The Alliance for Citizen Directed Supports was founded with the intention of ending all facilities like Polk and White Haven that segregate people with intellectual and developmental disabilities (I/DD) away from their communities. Instead, as both Robert and Marian testified, all people with IDD should live in their homes and communities with supports that they direct. It is a basic human right that all people should have control over their lives, and facilities like Polk and White Haven deny people those rights.
On no occasion have we ever concluded that a person’s support needs were too complex to be supported in their home and community.Marian Frattarola-Saulino
Self-directed supports allow individuals to choose and train the people who provide them services. It allows them to determine what is most important to them being successful in living fulfilled lives, not an institution deciding what “success” means for them. As Robert Zotynia testified:
We do lots of training, and I get to be the co-facilitator. We don’t just teach them the stuff the government makes us teach, which is really important stuff, we also teach them about me, the things I like to do, and how I do them. And that is what I think is really the most important stuff!Robert Zotynia
The closure of the Polk and White Haven centers was unfortunately met with significant opposition by local community members. Even though institutions like these have long been proven to be harmful and inhumane, there is a lack of education about alternative models to institution provided care. That is why the Alliance for Self-Directed Supports exists, and why it was important our members were there to testify.
The full statements Robert and Marian delivered were as follows:
Robert Zotynia’s Testimony:
My name is Robert Zotynia. I work for Self Advocates United as One as a power coach. I am 32 years old and I live in my own home. I also have complex medical and behavioral health needs.
My mom and I share our house, and my staff help me with everything I have to do. I use participant directed services, and I have a supports broker to help me.
One of the reasons I like participant directed services is that I get to pick my staff, and I get to train them. We do lots of training, and I get to be the co-facilitator. We don’t just teach them the stuff the government makes us teach, which is really important stuff, we also teach them about me, the things I like to do, and how I do them. And that is what I think is really the most important stuff!
I want to tell you about some stuff I do. I am an artist. I am working with the Office of Vocational Rehabilitation (OVR) to figure out how to sell my art because I need money to pay my bills. I also like to volunteer. It is important to me to volunteer, because a lot of people have helped me and my family, and we think it is important to pay it forward.
I’m also an advisory committee member for the Person Directed Housing and demonstration grant, and a member of the North East Regional PDSS Expert Council.
I am a registered voter, and I write to and meet with my elected officials a lot to tell them about the things that are important to me and my family.
I use lots of social media. I am on Facebook and Twitter, and I am working on my LinkedIn profile.
Besides all that, I go to a wellness clinic and the library every week, run errands, and help keep my house clean. I have my own credit card so I can pay for everything I need and stuff we need for the house, but I have to watch my budget. My staff are good at helping me with that.
I like having fun sometimes too. I am really into music and go to concerts whenever I can.
I like going to a local pizza shop on Monday nights for pizza and to listen to the band, one of my staff found it and we go as much as we can. We have been going so much that people are starting to remember me, I even met the band. My mom said that I am building social capital, but I just like to say I am making friends.
I like my life. I like doing what I want, when I want. And I really like having staff who I choose. My staff help me with everything, especially managing my health. I was very sick a few years ago, but now that I have good supports I haven’t had to go to the emergency room in over 2 years.
One day my mom won’t be here to help me and we talk about that a lot. I want to keep living in my own home when she’s gone. So, we’re working on a plan now with help from my circle of support. They’re going to help me manage my finances and to make sure I have the resources to take care of my house. I know my supports broker will keep helping me, so I will always be able to manage my staff when she is gone. Mom says that makes her sleep better at night.
Thanks for listening to what I had to say.
Self Advocate, SAU1 Power Coach
Marian Frattarola-Saulino’s Testimony:
Thank you for the opportunity to provide testimony on the closure of White Haven Center.
I represent the people with disabilities, their families and staff who use the services offered by our community service provider organization. I have been a community service provider all of my career. My colleagues and I have supported many people to move from State Centers and numerous psychiatric hospitals into homes in their chosen communities. This was only done successfully when we worked in partnership with the people, their families, and the staff who had known and cared about them for many years.
On no occasion have we ever concluded that a person’s support needs were too complex to be supported in their home and community. In fact, we see the job of the community service provider to either have or gain the expertise, knowledge and skills necessary to support someone to live safely as a valued member of their neighborhood and community. Again, this expertise is in part, gained from people who know and care about the people supported.
People with complex needs CAN and DO have really good lives as members of their communities. We know that for this to be possible for people who have lived in institutions- or have been served institutionally- they need holistic support to be healthy and secure in their new environments, to learn to responsibly use the freedom they did not always have, and to develop relationships so they can be healthy, safe and fulfilled in their lives.
We understand the fear around, and know a person’s transition needs to be thoughtful, intentional, and with the person themselves holding the highest level of control- with a team of very supportive and knowledgeable people around them to listen and learn from them, and from each other, every step of the way.
As a community service provider, we support people in many communities throughout PA, with significant and complex behavioral, communication, medical and psychiatric support needs, exclusively in their own homes and communities.
After 15 years, we have established without question that the more complex and significant the support needs, the more compelling the rationale for:
1) enabling the person and their family to control many if not all aspects of their services;
2) living in a place they choose, with people they choose to live with based on compatibility, interests and other factors not diagnoses
3) a focus on strength-based assessment and planning, with assistive and independent living technology considered as components of the support system
4) an emphasis on building and sustaining connections within people’s communities for all of their health, career, social and relational supports, with assistance from a workforce that they themselves choose and manage, with the help they design and direct
Our efforts are geared toward making services that are person directed, family centered and community based, a reality for all.
Co-Founder and Executive Director, Values Into Action