Thousands living with developmental or intellectual disabilities are being left out in the cold | Opinion – NJ.com
By Kristin Corrado and Anthony M. Bucco
Vitally important adult day programs that serve more than 12,000 New Jersey residents living with developmental or intellectual disabilities have been locked tight for more than a year.
In March, at the outset of the COVID pandemic in the state, Gov. Phil Murphy declared a public health emergency, closing “non-essential” businesses, schools, and the Division of Developmental Disabilities’ (DDD) congregate day programs, among other things.
Like the rest of us, these extremely vulnerable citizens found their lives up-ended with no idea when, or if, things would ever return to normal.
What none of us could have imagined was that more than a year later, these vulnerable residents would still be locked out of their cherished programs, even as restaurants, bars, schools, small businesses, and even youth and scholastic sports have been able to resume operations with modifications.
Almost 40% of New Jersey’s adult population have been vaccinated against the virus and the COVID-19 numbers have been steadily declining. Yet despite the desperate pleas of parents, advocates and care providers, day programs have remained closed while the rest of the economy slowly emerged from the governor’s crippling restrictions.
The parents and guardians of this vulnerable population have suffered for far too long without a voice and have become frustrated and angry as a result of the administration turning a deaf ear to their pleas for help. While other programs and schools began to open, the adult population of this community continued to suffer from a lack of support and structure in their lives.
The first real sign of hope for the individuals (and their families) came this week in an announcement from the New Jersey Department of Human Services. A memo addressed to “Division Constituents and Community Partners” revealed the framework of updated plans for the reopening of congregate day programs – a strategy that will help some but not enough of those who so urgently need the structure, routine, support and social interaction they rely on from adult day programs.
The new guidelines allow all-day programs to open at a capacity limit determined by COVID-19 Activity Level Index (CALI). The index uses a color system to classify the virus spread in each county, with red designating “very high,” orange for “high,” yellow for “moderate,” and green for “low.”
The state’s most recent index, from the week ending April 17, classifies 18 counties as orange (high) and three yellow (moderate). Under the new guidance, DDD programs in counties with these designations could open and operate at 50%.
We are relieved the governor finally listened to legislators and families to allow these programs to resume and we welcome this long-overdue first step. However, Governor Murphy’s continued reliance on metrics limited solely to those individuals with intellectual and developmental disabilities will prevent half of those who normally would attend the centers from the programs they desperately need.
That means more than 6,000 New Jersey residents living with developmental or intellectual disabilities who depend on adult day programs will be left on the outside, looking in.
It is time to stop this nonsense of hiding behind a color wheel of meaningless metrics and do the right thing by the thousands upon thousands of people living with developmental disabilities who need the support and camaraderie they find at adult day programs.
With that goal in mind, we are drafting legislation that would tie the reopening of DDD programs to the same criteria used for schools. The CALI index would no longer play a role under our bill. It makes no sense to use the CALI index when schools don’t follow it, and businesses aren’t impacted by it.
Prohibiting residents who desperately need the predictability, comfort and consistency of these day programs has taken a significant toll on the very residents who can least afford it. They no longer have a familiar routine now, and they are indeed suffering. Every day, we hear about the value of these community-based programs, and their roles in allowing so many adults to live the lives as independently as possible.
We have met with the parents and siblings of day program clients, and received desperate emails from families that are powerless to do anything while they watch their children struggle and regress in isolation.
The horror stories share common threads. On tear-filled video conferences, we have heard how young adults have deteriorated emotionally and mentally before their parents’ eyes. Family members report that once happy and gregarious loved ones have become anxious and depressed, and all-important social development has been suppressed during the pandemic.
There is no reason Governor Murphy cannot open the doors of adult day care centers to safely and responsibly allow all of New Jersey’s most vulnerable individuals to return to the routine-based settings that help them thrive.
Governor Murphy has finally responded to our messages and thankfully, some of those with developmental disabilities will finally begin receiving the relief they need. We hope this is only the beginning and once the openings prove safe, he will move swiftly to fully open these facilities to serve the entire community.
State Senator Kristin Corrado represents the 40th Legislative District, which includes parts of Bergen, Essex, Morris and Passaic counties. State Senator Anthony M. Bucco represents the 25th Legislative District, which includes parts of Morris and Somerset counties.
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