“Unlike Most Parents, We Want To Outlive Our Children.”

That’s a parent speaking to Paul Aronsohn, Ombudsman for Individuals with Intellectual or Developmental Disabilities and Their Families. As required, this past summer he submitted an Annual Report that details sentiments that may shock parents of neuro-typical children. However, parents with a moderately to severely disabled child will nod grimly as they contemplate who will take care of their beloved when they themselves are dead or incapacitated. After all, there’s little reason to trust the impenetrable state bureaucracy to keep their child safe and well-cared for.

As a parent to a moderately disabled adult child, I confirm these concerns live loudly within us.

And there are more of us than you think. Currently (according to an op-ed from Aronsohn) 1.8 million adults with disabilities live in New Jersey and 12% of NJ students are eligible for special education services. One out of every 32 students in NJ is classified as autistic. Some parents (many?) find various schools and state agencies unresponsive and uncaring. Aronsohn describes the friction, for example, when parents and local districts are fighting over whether a student’s needs can best be met in-district or out-of-district, which often leads to legal battles, “a terrible dynamic that places a financial and emotional burden on already overburdened families.”

That’s why the Legislature passed a bill in 2017 (A-3824) that established this new position of Ombudsman for Individuals with Intellectual Disabilities. I recently received Aronsohn’s report (anyone can see it: here’s the link) yet I’ve seen no news coverage. This is disturbing for all of us who care about people with disabilities.

So I’ve put together the highlights although the report is thoroughly readable and I encourage you to read it for yourself. (Note: As I’ve said, I’m not a disinterested observer; this is personal for me. My husband and I, even with our well-honed advocacy skills, find the entrenched bureaucracy unnavigable.)

Aronsohn begins by praising the compassion and hard work of case managers, teachers, and support coordinators and notes that some students have “solid, enriching educational experiences and some adults have “meaningful jobs” or “participate in dynamic day programs.” 

And yet,  he says, the last year of stakeholder meetings and sit-downs with legislators (he put 60,000 miles on his car travelling throughout the state) confirms for him that “New Jersey’s system of care for individuals with intellectual or developmental disabilities is a tale of two systems – one good, one not good enough. And now – having met hundreds more families and worked with hundreds more advocates, providers and government officials – I am fully convinced of that fact.”

Aronsohn describes “heartbreaking stories filled with anxiety and frustration as well as anguish and loss. Children denied desperately needed supports; some even effectively shut out of the classroom. Adults confined to substandard living experiences. Families traumatized and seemingly left to fend for themselves. For them, the system is not working. It’s too rigid. It’s too uncaring. And no amount of talk about ‘school budgets’ or ‘waiting lists’ or ‘Medicaid rules’ helps to mitigate their challenging situations. No denial – however rationalized — makes their situation any less devastating.”

His email folders confirm myriad families “falling through the cracks” as they chronicle experiences of “unanswered calls, unexplainable denials and unimaginable hardships.” The parents he contacts, he says, “are desperately, urgently seeking a better life for themselves or their loved ones.”

And it is that urgency that is missing from the state system, as well as a failure to recognize the civil rights of people with disabilities.

Aronsohn writes,

As discussed in last year’s report, families with disability are often overwhelmed. Like other families, they need to contend with a full range of daily pressures and challenges, but unlike others, they also have to worry about and care for at least one family member – child or adult – with a disability. The toll taken on these families is often physical, emotional and financial. For many of them, the challenges are 24/7. For many of them, there are no weekends or vacations or visits to restaurants. And so when they turn to us for assistance, they often do so with a very real sense of urgency.

And,

“Even in an age when practically everyone’s rights are being asserted and every group’s priorities are being advanced, there often remains a deafening silence in official circles when it comes to people with intellectual or developmental disabilities and their families – an inadvertent, albeit consequential reality that often leads to conversations and decisions void of any real consideration of their rights, priorities, challenges and opportunities. That’s true in Washington. That’s true in Trenton. And that’s true in communities throughout our State.

A major reason that people with disabilities are denied their civil rights, as he wrote in last year’s report, is that the system is enormously and unnecessarily complex. This complexity remains “one of the biggest barriers for many individuals and families trying to access and navigate New Jersey’s system of care.”  Yet here he is a year later and nothing’s changed:  “I stand by that point. The system is still too confusing.” It’s also rigid. While we should be doing everything we can, he says, to “get to yes,” most often families hear “no.”

Here are two examples of the system’s rigidity — its tendency to say “no” rather than “yes”:

“Following years of a great school experience, a young adult with significant physical disabilities began participating in a day program. In 2017, due to the transition into the fee-for-service system, the day program provider informed the family that it would no longer provide transportation. In fact, the provider adopted a seemingly arbitrary catchment area of 10 miles, which effectively and immediately eliminated transportation for this individual as well as others in this remote part of the State. As a consequence, this individual now sits at home 2 weekdays per week and one of the parents is only able to work part-time…

And,

For a child’s family, State government policy currently allows 60 hours of in-home respite per every 90 days – effectively 20 hours per month. A parent with two children – one with autism and challenging behaviors — requested an additional 10 hours of respite per month to meet the basic care needs of everyone in the family, including the other child, who often feels neglected. Government officials declined the request, noting that they have never allowed such an exception before. The family has since been seeking an out-of-home placement for the child with autism – a decision that is devastating for the family and far more expensive than the cost of additional respite….” 

Aronsohn writes, “equity is not about giving everyone the same services and supports; it is about ensuring everyone has the same opportunities.”

He continues,

“For some, that may mean more services. For some, that may mean more supports. In fact, that perspective is already built into our system of care – to some extent – in that person-centered assessments determine the budgets and level of services and supports available to individuals.

Now, we just need to take that to the next level – giving individuals and families more flexibility on how they spend those budgets and how they utilize the services and supports offered. We must recognize that even people with the same disabilities and who are even at the same tier / budget level will likely have different, unique needs. As the saying goes, ‘When you’ve met one person with autism, you’ve met one person with autism.’ And that can and should be said about every individual, regardless of disability status. Again, each person is unique. Each situation is different.”

He offers easily-implemented suggestions. For example, one of the difficulties for parents of children with severe disabilities is the roadblocks to accessing their right to Reliable Direct Support Professionals (DSP’s) who help out with hygiene, daily living skills, and behavior problems. But the turnover is rapid because we underpay them for this truly exhausting job, about $12/hour or $24,960 a year, barely above minimum wage. If we are serious about meeting the needs of people with disabilities, not to mention their civil rights, “that means living wages. That means benefits. That means continuous training. There is no other way.” 

Another example: Once a child ages out of a school district, parents have to choose a Support Coordinating Agency to access services.. Yet, Aronsohn writes, “I often hear complaints…regarding a lack of responsiveness, experience and consistency, due to seemingly high staff turnover. In fact, some have questioned whether this large profit-based case management model – currently involving about 180 private agencies — could ever work as effectively as needed. As one family member put it, “That penguin will never fly.” 

Reforming the state system for children and adults with disabilities is an urgent matter. That’s why the Legislature passed the law. Yet, a law and a metrocard will get you a ride on the subway unless the Governor’s Office and legislators to whom it’s addressed read the report, until they take action. Right now, while basic needs of some of our most vulnerable residents remain unmet, we’re left with parents hoping to outlive their children in order to not abandon them to a rigid and complex bureaucracy.

What do you think?

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