Advocacy for Us , For Others Too

By Erica Ploof

Erica is a longstanding member of the Family Advisory Board at HMEA’s Autism Resource Central, as well as a fierce and tireless advocate for our community . She testified on July 28th at the Massachusetts Joint Committee on Housing in support of a bill that would help families develop housing for their family members who are disabled or elderly. Her simple story told from the heart is powerful and exactly what the Committee needed to hear. We need more Ericas. Could you fill that need?

      Today, I had the privilege of testifying before the Commonwealth of Massachusetts Joint Committee on Housing.  Members of the state’s House and Senate sat attentively for three hours as public officials, human service organizations, professional associations and citizens gave testimony (in theory in three minute increments) in support of various housing related pieces of legislation that are before the current Massachusetts legislature.  I must start by commending the panel for their respectful attention during these proceedings.  Yes, some persons needed to come or go during the process, but I believe that panel was respectful and attentive to each of the issues addressed in testimony and to the witnesses that came before them.

There were a total of 21 proposals that were open to commentary.  These ranged from concerns over the reasonableness of homeowner association demands, a proposed smoking ban in residential apartments, to the preservation and creation of affordable housing and means of combatting homelessness – while promoting human rights of homeless persons.  Our testimony was woven in with that of others supporting the many items on the day’s agenda.

The bill that I was there to support S708- An Act relative to the development and preservation of affordable housing for persons with disabilities and the elderly was introduced by its sponsor, Barbara L’Italien.  Later, Autism Housing Pathways President, Cathy Boyle, presented a compelling story for the rational reasons for supporting the legislation.  She was much more quantitative and factual in her presentation, but I would have titled her testimony “How to take red tape and tie it into a bow – in seventeen easy steps, IF you’ll pass this step 17 into law.”  But that is why she wrote her own comments herself.  Maura Sullivan spoke of how this legislation could create a long term, sustainable, opportunity for her family.

My mission was to provide a similarly personal story that would narrate the need this bill would address.  When it was my turn to speak, I had two pages of type written testimony that I had rehearsed to assure that I would remain under (or at least near) the three minute mark.  I was ready, and then I started to address the panel.  I had watched the proceedings for nearly two hours before it was my time to speak.  The twenty feet from the back of the chamber to the panel seemed much further away that it could possibly have been from the front row.  And then I was taken completely by surprised.   I got choked up.  I nearly couldn’t speak.  Okay for a (long) moment, I couldn’t.  In that moment, I wasn’t an advocate, I was Mom.  To their tremendous credit, every person on that panel looked at me with patience and empathy.  To a one, they all moved a little bit forward in their seats and made it clear that they would wait.

I regained my composure and finished my testimony.  Cheryl Chan spoke next, but I confess – I missed most of it.  Partly, this was because the reporter from the State House News was making sure that he had the correct spelling of my name, but also because I was surprised by the emotional weight of the experience.  Joe Lehner then spoke of his desire to create an accessory apartment for his adult disable daughter.  He wished to preserve her familiar supports but to offer her the independences she hadn’t had in the forty years she has lived with her father.

After finishing up at the state house, I needed to race home to meet Conner’s team from DDS.  They were here to review Conner’s support plan for the coming year, its goals and its budget.  So, goes the circle.  I can help Conner, because people help us.  I can help others, because we have help.  I am grateful for the privilege and the responsibilty.

Testifying today felt harder than I thought it would even though I have had much opportunity to practice public speaking.  It was also easier than you might believe.  I simply needed to show up, sign my name, and tell my story.    What a country.

I think I helped us, and hopefully others today.  My testimony is listed below.

 

” My name is Erica Ploof. 

I live in Sterling with my husband and our two sons, Jackson- 14 and Conner – 17.  Conner has autism.  He attends a specialized day school designed for students with autism.  He is also supported by the Department of Developmental Services. 

Despite Conner’s developmental disability, Conner enjoys good health and an active life.  He enjoys swimming, hiking, running and most of all, his IPad. However, he requires full time support and supervision to participate in the world around him.  When speaking, he can be difficult to

understand.  Recently, a town police officer was asking him basic safety questions: What is your name?  Where do you live? – in order to gage his intelligibility to emergency personnel.  He did fairly well.  However, despite the fact that we were in Sterling, she thought he was saying he lives in Stoughton.  So, we’re still working on this.

At first glance, there is nothing visibly different about Conner. He is nearly six feet tall, 185 pounds and if I dare say so, rather handsome.  My sweet little boy has become a young man – a young man who is not always able to be understood by strangers.

However, with the support of a dedicated team of friends, family and teachers – Conner has become a part of our community.  Norm did not enjoy more celebrity at Cheers than Conner does at our local Friendly’s restaurant.  He is similarly well known at other local haunts:  the rail trail where he hikes, the grocery stores where he shops, the barber shop, parks, our town beach, the library and so many other places.

Conner requires full time supervision at home, too.  His safety awareness and self-help skills simply do not allow for us to forecast that he will ever be able to live on his own.  Based upon eligibility, at 22 when Conner completes school and transitions to the Adult Services world of DDS based on their criteria, Conner will be eligible for residential supports.  However, of the more than 800 individuals served by the DDS who turned 22 in FY14, only 240 received a group home or shared living placement.

If Conner had turned 22 last year, he would not have been prioritized as one of the 240.  The unfortunate truth is that while Conner has intense needs, there are others who need even more and have even less.  However, he is deserving of an adult life of his own.  S708 – An Act relative to the development and preservation of affordable housing for persons with disabilities and the elderly, sponsored by Senator L’Italien will create a mechanism for families like ours to create a home for Conner in his community.

This legislation will allow home owners in the commonwealth to modify their homes in a manner which will allow elderly and disabled family members to remain in their home communities.  They will retain access to their friends, family, neighbors and support systems.  Adding these apartments, with specific deed restrictions, will not change the composition of our communities, but will in fact preserve them.  It will allow families the opportunity to partner with the state to create affordable, sustainable housing solutions for Conner, the many, many others like him.

Thank you for your time and attention.  I hope that you will support passage of S708 – An Act relative to the development and preservation of affordable housing for persons with disabilities and the elderly”