Care Design NY members are sharing their employment journey stories to elevate disability employment awareness.  These stories describe the diverse experiences of people with disabilities and the employers that are benefiting from the dedication these talented individuals bring to their professional roles. 

Did you know that one in four individuals in the U.S. have some type of disability, according to the Centers for Disease Control and Prevention (CDC)?  Did you know the employment rate for a New Yorker with a disability (age 18 – 64) is 31.2% compared to 72% for a person without a disability, resulting in a gap of 40.8% according to New York State (click here)?  The COVID-19 pandemic disproportionately affected many who have already faced significant barriers to employment, compounding their economic hardships.  

We must use our voices and advocate for creating more accessible and inclusive workplaces by becoming informed on the value of hiring people with disabilities. 

 A person with a disability recently summed it up the best by stating, “my disabilities do not define me.  My abilities do.”

Please join us in widening the lens by elevating awareness on what needs to be done to remove barriers in the workplace, so individuals who have a disability have the opportunity to access meaningful and well-paying jobs.  Do you know an organization that is moving the dial on disability employment by removing barriers? 

The closing of all schools and mandatory stay at home orders during the COVID-19 emergency health crisis have been especially challenging for individuals with Intellectual and/or Developmental Disabilities (I/DD) and their caretakers.  Individuals with I/DD often thrive on routine and structure. 

Before the COVID-19 outbreak, a Care Design NY member, who lives with her grandparents was thriving at school. Her school program was the linchpin to her well-being.

Unfortunately, her world was immediately impacted on March 17, 2020, when New York State suspended all school attendance to stop the spread of the Novel Coronavirus. Her once daily routine, which included personal and social development opportunities to promote learning and skills development, abruptly ended. These had been instrumental in reducing and mitigating her frustration and resulting aggressive outbursts previously triggered by her inability to communicate.

"Her Care Manager has been able to fill the void and enrich the member's life"

Her grandparents were unprepared to address this overnight crisis that began to build. Their granddaughter’s challenging behavior returned, triggered by the loss of her familiar routine with appropriately designed daily activities and supports for emotional outlets that motivated her and provided stability.

Fortunately, her Care Manager has been able to fill the void and enrich the member’s life with regular FaceTime sessions. During these sessions they talk, laugh and review ways to reduce stress, such as drawings to express her feelings. Her grandparents have marveled over the difference in their granddaughter’s behavior as she eagerly anticipates the scheduled sessions with her Care Manager. The Care Manager continues to think outside the box by providing consistent and person-centered support uniquely tailored for her success.

It is the best feeling in the world when you achieve a daunting goal that at the time seemed unsurmountable. This is how one Care Design NY Care Manager describes an almost one year project. 

It was last July when an individual that Care Design NY supports received a letter from the U.S. Social Security Administration stating that her permanent resident card aka “green card” was no longer valid for Medicaid eligibility. She was informed that the long-term benefits that she depended upon for support would be suspended. She had one year to produce U.S. citizenship documentation, or she would have to reapply in seven years. 

She had no family that she could turn to for help. All ties with her birth parents were severed when the international adoption agency processed the paperwork for the American couple when she was only a few months old. She had lived with her adoptive parents until the county’s child protective services intervened. At the age of 14, she entered the New York foster system. 

On her 18th birthday, she declared her independence as an adult and became eligible for Medicaid. This would open a new chapter in her life with an opportunity to receive medical and mental health benefits and a chance for a quality life. She began to receive long-term supports and services (LTSS) from the county’s Arc for medical, mental health, and a variety of other services. These services, tailored for her unique disability needs, helped to establish a foundation for a quality life. 

 It was shock last summer, the Care Manager recalls, when she called him. The full impact of what this non-eligibility of benefits letter would mean and how it would negatively impact not just her quality of life but quite frankly her survival was frightening. Everything that she and the care management team had worked so hard for was in jeopardy. 

"The heart of a Care Manager has persistence, compassion, and curiosity to keep on going and to advocate for the best possible outcome."

They went to work trying to unravel an international adoption process. She did not have documents with clues to the name of the international adoption agency who would have her official birth and adoption records and her foster mother was seriously ill in the hospital. 

The Care Manager recalls there are moments in your life that you look back on and wonder how you possibly accomplished what seemed to be at the time to be an impossible undertaking. To quote Nelson Mandela, “It always seems impossible until it’s done.” 

He consulted with others on the Care Design NY team. With advice on next steps, which included first identifying when she was adopted and the name of the international agency, he made numerous phone calls leaving message after message to the U.S. Immigration authorities and the county. 

It would be weeks before a county worker would contact them. He remembered the case from years ago when the young woman was rescued from unfit adoptive parents. He identified the next step which would require consent for the sealed records to be opened.

They found the name of the international adoption agency in the county’s child protective service records and they were hopeful. But this led to a dead end. The agency had moved out of state, almost 3,000 miles away. With the distance and time zone difference, he lost count of the number of phone calls and messages he left urgently pleading for someone to help. He stated, “I called incessantly. I wanted to be on their radar.”

Days and weeks went by and it was challenging to keep hope alive. He stated, “I realized at one point during the long ordeal waiting for a response that I’m not a superhuman, but just an average person doing their job.” 

Then months later, the COVID-19 pandemic had just started in the U.S. and it seemed that there would never be a breakthrough in the case given the amount of turmoil globally. But a crack in the case appeared and then light came pouring in. He vividly recalls the day the adoption agency representative called stating, “we found it!” 

The agency then sent a large envelope containing a document written in beautiful calligraphy, officially stamped, and signed. She had been a U.S. citizen since she was one year old. The bureaucratic nightmare was over. The adoption agency wrote a letter to the Social Security Administration and benefits were restored.  The Care Manager only remembers seeing a very bright light as if coming out of a long and dark tunnel. “This was a realm,” he stated, “where I’ve never been before; navigating immigration, social security, international adoption and a myriad of other details important to cracking the case.” 

His Regional Director commended him on his perseverance and dedication stating, “The heart of a Care Manager has persistence, compassion, and curiosity to keep on going and to advocate for the best possible outcome. Care management is all about a strong heart and courage. Knowing the person, you support, respecting their wishes, and bridging trust and bringing in resources when necessary to help. He exemplified all these traits, always advocating for what was right and just, and understanding what would make a difference in this member’s life. He is truly a superhero and a wonderful advocate for the individuals he supports.”