Most individuals with Intellectual and/or Developmental Disabilities (I/DD) require support throughout their lives. Thanks to advancements in medicine, adults with developmental disabilities are living longer and healthier lives.
This means that for individuals with I/DD, whose parents did not want someone else caring for their child, they and their parental care givers are aging in place together. According to the Arc, in the United States alone, nearly 900,000 family caregivers are over the age of 60. And the number of adults with I/DD aged 60 and older is projected to nearly double from 641,860 in 2000 to 1.2 million by 2030.
While most aging caregivers implicitly understand the need for future planning to ensure continuity of care for their adult child with disabilities, the mutually dependent relationships developed from decades of sharing a home make this more of a challenge. It is difficult for the caregiver to bear the thought of no longer caring and advocating for their child, many older parents also experience sadness of separating from a lifetime of companionship. Separation anxiety is a very real emotion at any age.
Such was the situation of a Care Design NY member who lived with her 101-year-old mother. While the COVID-19 health crisis disrupted and wreaked havoc for hundreds and thousands of American lives, including this family who Care Design NY supported.
The mother became immediately ill and was transported by ambulance to the hospital from the home she shared with her adult daughter with I/DD. She would never return to the home. Overnight, the daughter became separated from the only person who took care of her every need for decades.
Fortunately, the care coordination supports included a line of communication with relatives who notified the Care Manager. She intervened quickly to de-escalate the emergency situation. The Care Manager worked with a provider agency and OPWDD to identify and secure emergency residential placement for the member. The screening process was accelerated, and the woman was accepted into a safe and secure residence with direct support professionals. The Care Manager was also able to quickly intervene and arrange the necessary financial support from Medicaid to pay for her medical and living expenses. The Care Manager’s support and interventions made a critical difference for this member to successfully bridge an unsafe living situation to a viable new living arrangement with support.
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 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.
Individuals with Intellectual and/or Developmental Disabilities (I/DD) often have some types of co-occurring chronic medical conditions. Depending on the level of support they require, their quality of life and survival can depend upon the daily assistance of care givers to meet their most basic needs and provide critical supports and services.
The unprecedented Novel Coronavirus (COVID-19) pandemic is exposing cracks in the health care system designed to protect individuals with I/DD. Such is the case of an individual that Care Design NY supports.
This member’s stepfather tested positive for COVID-19. The household was mandated to a two-week quarantine. Like so many individuals with I/DD, this individual requires many medications to manage chronic conditions. His supply of one prescribed drug to help control seizures, which it vital to his safety and well-being, would run out in one week.
While renewing prescriptions is generally a simple process, with his caregivers ill and the entire family under COVID-19 quarantine orders, the Care Manager uncovered this very dire situation in her outreach. She discovered that not only was the medication’s supply within days of running out, but the prescription also could not be renewed. Apparently, the prescribing physician was recently unavailable.
A desperate medical emergency was about to play out with his mother also very ill and unable to contact others. The Care Design NY Care Manager asked her Senior Supervisor to intervene.
Within a matter of hours, this perilous situation was escalated. She advocated vigorously that without this prescription to control epileptic seizures, he was at great risk. These efforts successfully resolved the situation with the prescribing doctor and within two days, the seizure medication was prescribed and delivered.
The family is grateful for Care Design NY coming to their son’s aid and addressing this crisis to ensure his most basic supports and services were met.
As hospitals all across New York State restrict visitors, because of the risk of spreading the infectious COVID-19 virus, many critically ill patients find themselves in medical solitary confinement. This frightening new COVID-19 reality is especially profound for individuals with intellectual and/or developmental disabilities (I/DD).
Individuals with I/DD often have more complex health needs and complications. They also depend upon familiar staff and family to assist them in communicating to others and helping them understand their own health information.
In the case of a Care Design NY member, his mother found him suddenly stricken and unresponsive in bed. He was rushed to the hospital. His diagnosis was pneumonia in both lungs. And because he was being tested for COVID-19, hospital visitors were prohibited.
His mother tried unsuccessfully to get updates from the hospital on his condition until his Care Design NY Care Manager’s supervisor intervened and contacted the provider. She was able to learn and communicate to the parents that their son’s pulse oxygen and blood pressure were very low and getting worse. They were told that there was nothing to be done except pray.
Finally, after numerous phone calls, too many to count, to social workers, care managers, and other support groups, the Care Manager Supervisor reached a patient advocate who was able to allow the parents access to the hospital. A two-minute visit to his bedside was a gift from heaven.
His mother commented afterwards, “he looked like an angel and doesn’t appear to be in pain.” She was also comforted by his hospital caregivers who reassured the parents that his medical needs were not only looked after, but his emotional needs as well. They frequently held their son’s hands providing comfort and assuring him he was loved.
While his condition remains grave, through the Care Manager Supervisor’s extensive advocacy and intervention, the parents are at peace today having met his compassionate, hospital care givers.
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.
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.”
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