The quiet crisis in New Jersey disability care

In New Jersey, one in every four residents lives with a disability.

It's a challenging situation that is often overlooked by policymakers and elected officials.

Sadly, hundreds of thousands of families are searching for help and answers on a daily basis. Many people have raised red flags when it comes to group home care.

Abuses, neglect and people simply falling through the cracks are the most common issues advocates hear from families.

New Jersey disability services under strain

Then it comes to self-directed care; it's the bureaucracy, lack of funding and access to resources that plague parents of children and adults suffering.

That said, many people, including many within the disability community, are not familiar with "self-direction."

There is a need to increase the promotion of "self-direction," which could be a win-win for families and taxpayers.

Self-direction often leads to a better, safer, more fulfilling life for the individual with a disability and the family members providing care.

Self-direction is also much more cost-effective and will likely lead to budget savings, which should empower the state to allocate resources more efficiently and serve more individuals/families in better, more person-centered ways.

Former NJ ombudsman weighs in on self-direction, budgets and home-based care

In that context, I spoke to the former New Jersey Ombudsman for Disabilities Paul Aronsohn.

Paul discussed the present bias in favor of provider agencies and the corresponding restrictions only placed on families, restrictions that make it difficult, if not impossible, for families to care for their loved one at home or in other least restrictive settings.

Paul has some advice for the new Administration in Trenton:

1. Budget Authority:

Allow self-directing families to use their State-assigned budgets as they see fit within reason and with guardrails, similar to what is allowed in New York.

Families know best.

2. Private Duty Nursing:

Eliminate the arbitrary (and cruel) 16-hour-per-day cap on private duty nursing.

If someone's clinical assessment suggests they need more than 16 hours per day, they shouldn't have to live in a group home or nursing home.

3. Overnight Staffing:

Similarly, if someone requires overnight staffing for medical and/or behavioral reasons, they shouldn't have to live in a group home or nursing home.

Again, these types of changes would not only lead to better, safer, more person-centered life experiences, but it would most certainly save money at the same time

Win, win.

There is a bill that has been proposed in the Assembly that will focus 70% of the spending for group homes on direct care.

This is another example of how important 'self-direction' is, as 100% of the monies go to direct care because there is no overhead, no administrative expenses, and many other cost savings.

If you or a loved one is facing a disability and you are looking for answers or hope for anything related to care, please contact the Ombudsman's Office here.

The post above reflects the thoughts and observations of New Jersey 101.5 talk show host Bill Spadea. Any opinions expressed are Bill's own.

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