Paul has always been an advocate and friend to his younger brother, Richard, who is a Partners Health Plan (PHP) member.  Paul's wife stated, "they are just like two peas in a pod!" 

He can't imagine life without Richard in it.  When their mother decided that Richard would be healthier and happier living in a community setting in a residence, with opportunities for interaction with others and to build his practical life skills for independence, “big brother” Paul helped with this transition. 

 Paul’s advocacy for Richard and all individuals with disabilities burns deeply inside of him.  He started a sibling group in New York which is part of a national organization. When asked about the Direct Support Professional (DSP) workforce crisis in New York State and across the country, he stated, “it’s very important that a permanent wage increase happen in this year’s State budget.  A one-time bonus will not fix the problem to retain and recruit DSPs.”

 He described how his brother has flourished in a group home primarily because of the dedicated DSPs who love what they do and have it in their hearts to do the job.  He stated, “During the COVID-19 pandemic, they stayed in the home to make sure the residents had the care they needed.  My brother’s home is understaffed like so many.  It takes a special kind of person to do this work and its incredibly important that we value and celebrate DSPs.  They provide emotional and physical support and opportunities for socialization.” 

 As past president of The ARC Nassau, Paul understands intimately what is required for the IDD service delivery system to fulfill its mission of supporting individuals and their families. He stated, “We need to focus on how DSPs enter the profession and it’s critical we provide them with a promotional pathway.  Without DSPs, we don’t exist.”

He smiles when he thinks of his brother, Richard, who he describes as a loveable guy and very helpful to others and who loves all his DSPs.  He stated, “Without DSPs, Richard would not be able to live in the community and that would be a huge loss for every member of the community who benefits from perspectives of individuals like my brother, Richard.  Inclusive and accessible local communities with strong social networks are a win-win for everyone and DSPs fill an important role in making this happen.”

The COVID-19 public health crisis made life extremely challenging for people across the globe.  And for people with autism, it was even more difficult.  Social isolation and disruption in routines during the pandemic when services and programs shut down directly affected individuals’ social functioning and everyday routines. Parents were not prepared when the day schedules their children depended upon were turned upside down because of COVID-19 restrictions. 

William or “Willie” as he is known to his friends and family had his routines that he loved pre-COVID that kept him fulfilled .  These stopped abruptly when the COVID-19 pandemic struck New York.  The day program which included visiting parks, volunteer opportunities, and excursions to the YMCA that allowed for socialization and stimulation which everyone needs for happiness and mental health well-being vanished.  Willie’s mother stated, “It’s very sad that no one speaks of these tragic losses.”

Fortunately, for Willie and his family, there were resources and hobbies to help sustain activities that would help Willie to alleviate mental anguish that anyone would naturally experience.  His family scheduled appointments around each other so Willie was always with a family member and involved in activities that he enjoyed.   Every parent who still has a child at home with them can relate to this.

 A person with Autism is very content and happy to be in their own thoughts, so it’s important for their well-being to bring them back to social activities where they can actively participate.  Willie’s mother stated, “he has a great movie collection and likes to order a movie in different formats.  He is very technologically savvy and has the devices to play these movies on various devices.  Willie is very skilled in manipulating the devices to replay his favorite movie scenes. The technical aptitude for things he is interested in is amazing.  His memory is fantastic and almost photographic.  Willie knows theme music for movies and if you tell him what year you are born, he’ll tell you what movies were produced. He grew up watching classic Disney movies and sometimes uses those scenes to express emotions and let out his feelings.  He also appreciated occasional shopping rewards such as the Amazon online store during the pandemic.

 While his time with family has been very satisfying, Willies misses the socialization and work experiences had once excelled at pre-pandemic.  Now that the world is opening, Willie would like to get back to experiencing and doing more.  He was once very successfully employed working in the VA hospital dialysis unit making needle packages for patients, according to his mother.  She stated, “ He easily negotiated a 15-floor building to meet his employment responsibilities.  We are looking forward to Willie finding his passion and reconnecting with his peers now that the world is opening up."

There are exciting future opportunities in store for Willie and his mother stated, “Thanks to Willie’s Care Manager, Kaymarie, he will have many exciting adventures ahead.  She was the first care manager who was able to access the type of services to give him hope for the future.  She is an angel.”

 Stay tuned for exciting future updates on Willie.