It’s 9:10 am and so far my son has eaten breakfast, watched two reruns of “Emeril Live,” played on his iPad, gone on a bike ride in his pajamas, and asked me 14 times when his dad is coming home.
The 14 times is an estimate. Here’s what’s not: His day program for adults with disabilities has been closed for 419 days. Jonah’s a trouper and we’re blessed that he mostly entertains himself. But for over a year he’s been deprived of programming he desperately needs.
This afternoon, managers at my son’s program have scheduled a Zoom call with parents to discuss how/whether/in what form they will reopen. My husband and I have no idea what details will be shared today, but we’re hopeful that one day soon Jonah will have a reason to get out of his pajamas. Other families in New Jersey have reported a wide variety of restart plans; all are restricted because last week the New Jersey Department of Human Services said day programs could operate with capacity determined by the COVID-19 Activity Level Index (CALI). Gov. Murphy says this means 50% capacity, precluding full-time access for the 12,000 NJ adults served by day programs. Also, those who travel on buses must sit six feet apart, even with masks on (while schools do fine indoors with three feet). Some programs can only offer one or two days a week of programming and/or shorter days. My husband and I are holding our breath.
Meanwhile, schools, daycare, restaurants, camps, bars, airlines, trains, buses, and gyms play by a far less restrictive set of rules. In some circles this would be called discrimination. I know it is in mine.
We’re not alone. Several parents recently formed a Facebook group called “Advocacy for Adults with Disabilities.” They started a petition (almost 7,000 signatures!), wrote letters, showed up at Gov. Murphy’s press conferences, lobbied legislators, marched in protest last Saturday. Here are a few of their comments:
I sent this in an email along with the link to the CBS story to Steve Sweeney, Judy Persichelli and Paul Aronsohn and tweeted it to @govmurphy @NJDeptofHealth , the transportation issue needs to be addressed as well in our fight to get restrictions lifted…. not special treatment but equal treatment. I’m sending this news segment from CBS New York, myself, my cousin and another family are featured in it showing what Governor Murphy’s unfair and unjust restrictions have caused. He must remove all restrictions including the ones on transportation for our children. If hundreds of people can fly on airplanes sitting an inch apart why does this population have to be 6 feet apart on a bus?!? Discriminating and disgusting what this administration is doing and it has to stop now!
This has been a long year and we have all suffered on so many levels, but together as a team we have started to be heard. We still have work to do and awareness to spread. We need 100% not 50%.Governor Murphy can not think that 50% is ok! Our population has been greatly discriminated against for way too long. Governor Murphy do you recognize that it is a person’s civil right regardless of disability, race, religion, even age to not be provided appropriate services to improve ones life.
Enough is enough and WE MATTER! Again, all you special needs parents, caregivers, day programs and news media that supported us thus far, you ROCK! We will continue to work together and we will continue to be the voice for our children that can’t voice themselves 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. Meanwhile, many daycare, schools, camps, and extra-curricular activities are open full-time, independent of CALI levels. Only adults with disabilities receive ‘special treatment.’
In related news, yesterday NJ State Senators Kristin Corrado and Anthony M. Bucco announced they are drafting legislation that would tie the rules used to open schools to the rules used to open day programs. In other words, get rid of the CALI level restriction that they describe as “nonsense of hiding behind a color wheel of meaningless metrics” which “makes no sense…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.”
How does one reconcile these two dueling facts: New regulations from the Governor’s Office allow 150 people inside for “private catered events” but day programs are restricted by meaningless metrics and inequitable rules that apply only to those with intellectual and developmental impairments.
This is not “special treatment.” This is discrimination and, arguably, a violation of civil rights. Governor Murphy, you can do better than this.