Indeed, Gov. Phil Murphy's administration inherited a system in "considerable disrepair — one that was far from meeting the needs of many New Jersey individuals and families," said Paul Aronsohn, the state ombudsman appointed by Murphy last April to work with those affected by developmental or intellectual disabilities. 

In his 17-page annual report sent this week to

lawmakers and department heads, Aronsohn outlined complaints from families, nonprofits and service providers. They included: 

"I think fixing that system and investing the resources could pay off both in terms of better outcomes for individuals, as well as better financial outcomes for taxpayers," said Aronsohn, whose three siblings were each diagnosed with disabilities. His report recommended the Murphy administration study ways to simplify and improve the system. 

Lisa Parles of Glassboro said the stories of affected families are rarely told or addressed by policy makers.

An attorney and the mother of a 28-year-old nonverbal man with multiple disabilities, Parles said families struggle for access to effective medical care, appropriate in-patient programs and quality residential and day programs. 

"They suffer in unimaginable solitude, as their loved ones engage in dangerous and sometimes life-threatening behaviors," Parles said. "In my law practice and in my work nationally, I've met families whose loved ones have ingested batteries, jumped from moving cars, eaten medical dressings and even extracted their own teeth." 

Mary Detri, a representative from the New Jersey Hospital Association, told the committee that patients with disabilities and severe behaviors are sometimes brought to emergency departments and left without a place to go.

Patients are hospitalized for months without a medical problem, and costs associated with their stay are absorbed by the hospitals, she said. 

Detri said she also participated in the state task force, but its recommendations were left mostly "in a drawer."

Continued

New Jersey law already guarantees individuals with disabilities certain rights — including privacy, respect, and the right to associate with others as they choose.

The Garden State is not alone in its quest to expand protections for guardians. Legislation under consideration in New York would provide similar rights to family members who are legal guardians of an individual with developmental disabilities under some circumstances.

The family-members bill, (A-3477) sponsored by Vainieri Huttle alone, would create a 10-point “Bill of Rights for Authorized Family Members of Persons with Developmental Disabilities;” it also would define “authorized family members” as a parent who is already a legal guardian, or another relative named by the legal guardian.

In addition to requiring respectful interaction, the legislation would give authorized family members the right to receive basic treatment and medical information needed to make an informed decision, to be provided with responses in writing, and to have calls or questions addressed in a reasonable amount of time and in language that is “understandable.” It would also require service providers to outline what families should expect and explain the options available if they feel their loved one is not getting adequate care.

Continued

Related Stories:

Is legal guardianship necessary for adults with developmental disabilities?

NJ’s most vulnerable residents: Understanding the challenges of a dual diagnosis

Also, hospitals would be reimbursed by the state when they are essentially forced to care for developmentally disabled people who have no medical need requiring hospitalization.

Braun’s SB 5523 is intended to bring more accountability to the delivery of health care to low-income Washington residents on Medicaid – the focus of another Economic Sense paper, issued in February.

“It costs our state’s taxpayers nearly $6 billion a year for what is called ‘managed care,’ yet the companies receiving that money can’t manage to provide care at levels even close to the national average,” Braun said. “That’s unacceptable, particularly when some of the measures are related to the health of women and children.

“This bill would tie performance to payment – and if performance improves, then both the clients and the taxpayers will benefit.”

Continued

Board member and Canyon County Sheriff Kieran Donahue said the issue may have to be addressed in legislation.

Many board members echoed the sentiment, but they didn’t land on a new licensing model yet. They reviewed four options, ranging from keeping the ICF licensing but changing some statutes, to only providing coverage to committed clients and changing the licensing.

A change in how SWITC is licensed does not mean it would close.

“We have to be careful that we’re not getting rid of this place,” Shirley Beale, a board member and mother of a current resident said in Monday’s meeting. “We need to add to it not take away.”

Continued

At the request of Chairman Matthew Hill (R-Jonesborough), Michelle Gross will also appear before the subcommittee to share her family's struggles. 

Gross is  single mom living at home with her parents and raising two daughters in Jonesborough, Tenn. One of her girls — a bouncy 6-year-old redhead named Asher — has severe physical and intellectual disabilities. 

"No one could possibly afford the type of care we are talking about without going tremendously into debt," Gross said.

Continued