Last week Paul Aronsohn, Ombudsman for New Jerseyans with intellectual or developmental disabilities and their families, submitted his annual report to Governor Phil Murphy and legislative leaders. He notes that elected officials are not his only audience for this evaluation of the way the NJ government has served the disabled population; he has also written it for staff at all levels of government, advocates, journalists, and especially “the individuals and families at the center of our work as well as their neighbors, classmates, co-workers and friends.” [Disclosure: one of my kids has multiple disabilities.]

While Aronsohn has high praise for certain aspects of the way relevant agencies have responded to challenges this pandemic year, he also has some sharp criticism. Most importantly, he has smart recommendations. Here are some highlights from his report. Aronsohn sprinkles in some parent comments and I’ve included a few. 

• Aronsohn’s big-picture conclusion is that while many involved in the disability community have done ”extraordinary work,” the pandemic “has exposed and deepened the fault lines in our State’s system of care for people with disabilities. Vulnerabilities have been thrown into sharper relief. Weaknesses have been exacerbated.”

“In my first two annual reports,” he writes, “I asserted that New Jersey’s system of care is a tale of two systems – one good, one not good enough. Having now served as the State’s Ombudsman for about 3 years, I am restating that conclusion with even more certainty.”

School-Age Children:

“Almost daily, our office is contacted by those who are falling through the cracks. Despite federal and state mandates, their child’s education is less than ‘appropriate.’ Despite promises and official commitments, their ability to access much needed supports and services is lacking. Many are left to struggle on their own without any real help coming from government. Many literally call us in tears.” [For one mother’s story, see here.]

When schools closed and remote instruction began, “[a]lmost immediately  it became clear that this approach was having mixed results. Some families lacked the technology needed to participate in this new online reality. Some families were stretched beyond their limits as working parents tried to balance the increasing demands on their time, attention and energy. And some families, particularly within the disability community, discovered that virtual learning and virtual therapy just does not work for their children.

Indeed, many students with special needs have not only lost a year of school; many have reportedly regressed. Over the past year, parents have told us the most heartbreaking stories about children falling behind in essential skills (academic as well as basic life skills), while engaging increasingly in self-injurious and other dangerous behaviors. As such, we heard from many parents seeking relief. Many wanted in-person Extended School Year (ESY) programs last summer and wanted their school buildings to reopen last fall – only to be largely disappointed and left feeling that their children’s needs were being disregarded. 

From a parent:

“What is the governor doing to help special needs students? Four months into the pandemic and no school for our most vulnerable population. Our students are experiencing severe regression and a lack of learning. Many of our children will suffer from severe behaviors going back to school as their world will again shift dramatically. It will take months to get them back on track when school begins. What is the governor going to do for them? Will he extend a district’s responsibility to educate our children passed age 21 to make up for the lost time? Parents are doing their best but we are not a replacement for the teachers that have specialized training. We cannot provide that level of teaching.”

Adults with Disabilities 

“I have a haunting feeling,” Aronsohn writes, “that many adults who need supports and services are effectively being shut out of the system. Cultural barriers. Language barriers. Socio-economic barriers. For a host of reasons, I believe many adults with disabilities are ‘aging out’ of the children’s system of school-based entitlements and effectively falling off the figurative ‘cliff,’ never actually making it into the adult system.”

[For a description of my son and his best friend falling off the cliff, see here. For what it can feel like to parents, see here.]

What does New Jersey need to do to prevent young adults with disabilities from plunging off the cliff?

Ombudsman Aronsohn recommends making Support Coordinators (who replace school case managers once someone is done with K-12 schooling) “available to every 18 – 21 year old with special needs.” Why? All families, regardless of resources, would have a “partner to help them with all of the transition-related issues – adult services, employment, education, transportation, healthcare, legal status, housing, etc…This would likely go a long way toward eliminating the cliff, because it would help make the transition into the adult system more accessible, more understandable and more manageable for all young adults.”

While communication from the state has been pretty good, “[m]ore generally, we have heard complaints about unreturned calls and emails and just an all-around frustration with the ‘radio silence’ many have often perceived with respect to disability-specific information, particularly concerning the availability of personal protective equipment (PPE), the status of State education policies for children and the status of State-licensed day programs for adults.”

On quarantine rules for adults in group homes, Aronsohn says “we heard story after heartbreaking story of residents having little, if any, meaningful contact with family members. No real visitation permitted. No real means to connect through technology. No sense of urgency with respect to the residents’ emotional well-being.”

Parent Comments:

“I’m sure you have heard this from other families, but the lockdown from Coronavirus has been devastating for those on the autism spectrum and their families. Day programs were abruptly suspended, likewise the fitness center programs. Many young adults with autism need a lot of physical activity every day; if they don’t get it, they engage in self-injurious behavior, meltdowns, tantrums, etc. Boredom can even be a seizure trigger. My son’s forehead looks like raw hamburger because he is hitting himself so much out of frustration and boredom. That may do more damage to him than COVID-19 could. I know Governor Murphy is doing all he can to protect the lives of New Jerseyans. But life with a cooped-up autistic person can be so stressful, that we might prefer to take our chances against the virus.”

“We are asking that the NJ government acknowledge the mental anguish and permanent damage that this lockdown is doings to NJ families. It’s literally tearing families apart…. We are asking that you advocate on behalf of NJ families with disabled adults and push the DDD to permit parents to see their children in a more meaningful way.”

“We’ve been attending the online webinars ….Unfortunately, every time we asked about the {Department of Developmental Disabilities] DDD website translated to Spanish, (DDD) didn’t reply.”

The Inequity of Shuttering Adult Day Programs While Schools and Daycare Are Open

In May 2020, two months after NJ shut down, the Department of Human Services (DHS) created a 10-person working group to set guidelines for reopening day programs. Aronsohn’s request to join this group “was declined.”

Many families (mine!), he says, “questioned the need to keep day program sites closed throughout most of the year, particularly since the State reopened childcare centers on June 15 and many schools were reopened in the fall.” DHS refused to allow individuals with disabilities to use their budgets to buy laptops and other one-on-one devices in order to access the virtual programming day programs often provide. Some people can only access programming on their phones. Aronsohn writes,

We have heard many troubling stories about the limitations of virtual programming as well as the devastating effects of social isolation and changes in routine. Moreover, similar to the situation with closed schools, the closure of State-licensed day programs has had a terrible impact on many families, too – families who try anxiously to keep their adult children engaged and safe, families who must sacrifice their jobs to stay home with their adult children.

Then there’s this late addition to the report:

“Note: Just prior to the release of this report, DHS announced new guidelines for reopening day programs by the end of March 2021. These guidelines, however, have thus far precluded the reopening of most day programs throughout the State – a fact that has led many families to contact us to express their outrage, their concerns and their fear for the potential negative impact on their adult children and their families.”

Parent Comment:

“My reason for contacting your office has to do with the fact that there is still no soft or firm opening dates for any of the community based programming…. I’ll be frank – camps, schools, daycares are all open. There is a stunning lack of priority or concern about DDD families. Our folks are forgotten and the communication is poor again. We just feel that we aren’t a priority.“

[Personal note: It’s now mid-April. All adults with disabilities and support personnel in day programs have access to vaccinations. Not a word from DHS and day programs about plans to reopen after a 13-month shutdown. Meanwhile, schools throughout the state are open to in-person instruction, childcare programs have been open for a year, restaurants and bars are hopping. For more on the government-created obstacles, see here.]

Finally, one piece of criticism and one piece of praise from Aronsohn’s report:

One of the most disturbing revelations since he was appointed Ombudsman three years ago, he says, is “a seemingly disapproving undertone” from government officials “to conversations about the role of family members in the lives of individuals with intellectual or developmental disabilities.” He continues, “we have often heard from families who feel that they have been treated in disrespectful and dismissive ways by government officials, by provider agency staff and representatives and even by disability advocates. Their views disregarded. Their motives challenged.”

However, he praises Gov. Murphy’s commitment to  improving the lives of people with disabilities. To its credit, “the Murphy Administration has been working to bring that promise and commitment to life. It hasn’t always been perfect, and it hasn’t always been smooth. But there is no question, we are moving the ball forward….Working with our colleagues in the State Legislature – in both political parties and both houses – and our partners across the State, we have made progress on a range of issues and have made a difference in the lives of many of the people we serve.”