MASS Self-Advocates Testify at the MA State House

On November 22, 2021 self-advocates Kim Plaut, Francesco Hladysz, and Anne Fracht testified virtually at the Massachusetts State House in regards to bill H.272 An Act Relative to Supported Decision Making sponsored by Rep. Paul F. Tucker.

Their video testimony starts at 1:28:03 - https://malegislature.gov/Events/Hearings/Detail/4096/Video1.

Their written testimony is as follows:

November 22, 2021 

To: The Committee on Families, Children and Persons with Disabilities 

Senate Chair Adam Gomez and House Chair Michael Finn

Topic: SDM Legislative Testimony from Self-Advocates 

S. 124/H272 

My name is Kimberly Plaut. I am a board member of Mass Advocates Standing Strong. Many self-advocates are part of Massachusetts Advocates Standing Strong, an organization that supports and is run by self-advocates (people with I/DD) in Massachusetts. 

Mass Advocates Standing Strong has been involved in the process of this Supported Decision Making bill since 2017. We have seen how other self-advocates like ourselves become a part of this process.  It is very important for all self- advocates to have a voice. Supported Decision Making will give them that ability. 

Supported Decision Making is a tool that gives individuals the ability to take guardianship off the table. Our belief is that many self-advocates have the ability to make their own decisions freely with help from someone that they trust. Mass Advocates Standing Strong worked with many other organizations to put together a supported decision making agreement form. This agreement form allows people to select their support as needed.

I believe that all self-advocates and elders should have this opportunity in Massachusetts. Everyone uses supported decision making every day. Even you all sitting here today. Supported decision making is like talking to a friend or co-worker about how they can choose to do something, like today, you are going to talk to each other about whether or not to pass this bill. That is exactly what supported decision making is all about. Please consider this bill for all with disabilities and for elders. Thank you.  

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My name is Anne Fracht. I’m with Mass Advocates Standing Strong and Advocates Inc. to support the SDM bill.

These are some of the findings from self-advocates that we have been working with to help improve their lives. These are the challenges that many individuals with disabilities face every day. 

• Self-advocates often have difficulty getting others to respect their decisions, even if they don’t have a guardian

• Self-advocates with guardians want their guardians to act as “supporters” instead

As a law, Supported Decision Making would get more recognition from other agencies who support individuals with disabilities.  

We, as an organization would really appreciate it if you could acknowledge how this can change many lives. Not just for self-advocates but people around them as well.

We believe that we can make appropriate medical decisions by getting advice from people we trust and having Doctors talk to us.

For example, if I’m going to a specialist and someone is telling me to have surgery – this can be scary and bring up questions about if I really need this, do I need help, how do I prepare, what are the steps – a team can help guide me through it so I can make a solid decision.   The team can help me figure out how to make wise choices with my money and make it go further. 

We believe Supported Decision Making can give people the freedom that they want with the support needed to make good choices. 

Here is a story from one of our board members, Fran.  

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Hello my name is Francesco but I go by Fran.  I live in Pepperell. I am here in support of the Supported Decision Making Bill. I identify as a person with an intellectual and developmental disability. I use the pronouns he, him and they. 

 After my mom passed away recently, my sister and I started talking about what to do about guardianship.  I was looking at different options. My support included my sister, sister’s girlfriend and her mom. We are all living together.  They were concerned about how I would make medical decisions on my own or other decisions on my own if I needed help. I did some research and I came across suggestions but they kept going back to guardianship, which I didn’t want.  I don’t want my rights taken away. It would take away the decisions I wanted to make like deciding where I live.  It would have been up to the guardian. If I wanted to manage my own money I couldn’t.  It would be up to a guardian. 

Having my own decision making form will make me become more of a mature adult and be more responsible. I said, “I do not want my rights taken away.”  

Everything in my life came into place when I started using a Supported Decision Making Agreement form and picked my supporters. My support helped me understand medical results when I didn’t understand it.  If I didn’t have that support, I wouldn’t have understood it.  

Right now, my sister helps me learn about healthy relationships.  My sister took me in when I was in an unsafe environment, and with that support, I am now in a better environment.  

All this support around me is making me the person who I am today and the man I am today.  We all need support because without it, we won’t have that extra hand, and that goes a long way!  Your choices do matter in this life and you have the same rights to make your own decisions but you just have a little support along the way. 

We urge you to pass bill S. 124/H. 272.  

Sincerely, 

Massachusetts Advocates Standing Strong