I’ve been thinking a lot the past few days about what would be a good topic for my first attempt at composing a blog in a very long time. After researching and considering several topics, I realized the answer was right in front of me all along. So, I decided to co-produce (a word we hear a lot!) this message with the person who aspires me most, my son, Robert, and share our family’s journey.
Many of you know Robert. He is an amazing guy who, like many others who happen to have disabilities, has experienced challenges on his journey to develop the life he deserves and desires. As a young child, he could not wait to start kindergarten alongside his friends in the neighborhood. Imagine his (and my) surprise when the school district informed us he would need to go to a school in another community, because that’s where all the kids in wheelchairs went! We remember agreeing to tour the classroom so we would have all the information prior to deciding. On the day we went, we were horrified to find out the kids in this “special” classroom were excluded from all the other students and activities. We believe segregation can never be good, and to make the point, Robert’s dad asked if the children were allowed to use the public water fountain. Imagine our surprise (again!) when the teacher responded, with a smile on her face, that it would not be necessary because each child would have a special cup with their name on it in the classroom!
That comment, in addition to the “special” entrance so the children wouldn’t be disrupted by the other students, solidified our decision to advocate for Robert’s right, as defined by the Individuals with Disabilities Education Act (IDEA), to attend the least restrictive classroom. Just to be sure, we confirmed this by placing a call to the Office of Civil Rights (OCR), who assured us that Robert had the right to attend the school in his community and the burden would be on the school district to prove he could not be educated, with accommodations, in that classroom.
Quick side note on IDEA. This legislation was born out of the tireless efforts of many Pennsylvania citizens who advocated for the right to education, resulting in The Arc of Pennsylvania filing a lawsuit against the Commonwealth of Pennsylvania and ultimately resulting in a settlement, commonly called the PARC Consent Decree. Robert and I had the pleasure of meeting Thomas Gilhool, the attorney who argued the case, a few years ago. He is one of our heroes.
One of the happiest days of his life was his first day of kindergarten! His teacher was wonderful, although a bit nervous since this was her first experience teaching a student with disabilities. We built a support team and taught them to always assume competence (another term we hear a lot!). Over time, and by exposing Robert to the same curriculum as all the other students, he began showing us that he was retaining the knowledge. He learned about history, science, basic math skills, and a lifelong love of books. He “reads” with support from his amazing staff, almost every day. We could start a library with all the books he saves!
He also learned to sew & cook in what we used to call Home Economics class (does that still exist?) and play in gym class. I remember getting a call from a nervous principal one day when they were playing softball and he got hit in the head with a bat. I am sure they all thought I would be angry. After asking a few questions and realizing he was fine, except for a bump on his head (laughing in fact), everyone realized this is part of growing up. We did not decide to take him out of gym class. Robert, like everyone else, has the right to take risk, in fact he thrives on it!
Robert had many great years in school. He is proud to share that he was the very first person with a significant disability to graduate in cap and gown alongside his classmates.
This is where the real journey begins- navigating the adult world. We did not get a whole lot of help. The services that were available in our community were not inclusive. We were again faced with segregation or nothing. He did agree to try a day program for a while, but he was never really happy there. The staff were all nice. He enjoyed talking with them, but he knew it was not the right place for him. So, we started researching for what else was available and concluded that we would need to design it ourselves.
And that’s when we discovered Participant Directed Services (PDS). We fell in love instantly and began planning how we would build a support team that would help Robert take control of his life and explore the world. We also realized by using the PDS model to manage services we were agreeing to take on a great deal of responsibility- recruiting, hiring, and managing staff, as well as building a customized life where Robert would (and did!) become a contributing member of the community. Robert agreed to take on the responsibility, but also felt he would need some additional support.
Robert decided to use a Supports Broker and invited Values Into Action to join his team.
The support our family has received from everyone at Values Into Action has helped Robert find his purpose. Making the decision to take control of his services has led to so many opportunities. He found a way to imbed his passion for self-advocacy into everything he does. He works for Self Advocates United as One , teaching others how to speak up. For the past 4 years, he has chaired the Housing Advisory Committee and will soon be co-leading our Authentic Friendships project. He has a seat at the table, as an equal member whose voice is not only heard but also respected.
Pennsylvania has a rich history in the disability rights movement. People with disabilities and families, like ours, have led the movement. We could not have come this far without allies, like Values Into Action, by our side and amplifying our voice. Every one of you makes an impact every day. You do this by seeing the possibilities and partnering with the people we support to make their dreams and aspirations come true.
As we approach the end of this calendar year, Robert and I want to thank the entire Values Into Action family for creating a culture where all people belong and are valued for their contributions. Robert and I show our appreciation by dedicating our time and energy to pay it forward by helping others find their purpose.
