The 62-year-old developmentally disabled man is unable to care for himself and he cannot speak. According to his care monitor, Lois Byalick, 72, a retired social worker, he spends most of the day in his bed at Island Nursing and Rehabilitation Center in Holtsville. He has no family or friends to help oversee his needs nor the assets to hire a legal guardian, so Byalick visits him as part of a new program to improve the care of people supervised by state-appointed guardians.
Before 2018, Suffolk County judges would generally appoint lawyers to take on such guardianship cases pro bono, making those attorneys companions for life with many wards, who they were required to visit every three months.
“The single greatest obstacle to ensuring that our most vulnerable citizens are protected is a lack of individuals willing and able to serve as guardians," says Judge Richard I. Horowitz, 56, of Smithtown, a state Court of Claims judge and acting justice of the state Supreme Court of Suffolk County.
“While the law provides for the appointment of guardians, New York State does not have a statewide Community Guardianship Program,” Horowitz says, referring to New York City’s New York Foundation for Senior Citizens, which serves as guardian for incapacitated adults in the five boroughs.
“Judges have been forced to weave together a patchwork quilt to create a safety net,” he explains. “The most significant need is for people who are indigent and/or those with no family support.”
On the judge’s recommendation, a meeting was convened in at his Central Islip office last March with Robert Heppenheimer, 58, who has 30 years’ experience as an advocate for senior citizens, and Pegi Orsino, 67, of the volunteer organization RSVP Suffolk, to brainstorm how to increase the pool of individuals willing and able to serve as guardians in the county.
Heppenheimer, of Northport, and Orsino, who lives in Bellport, have worked together for 20 years at RSVP, the 850-volunteer group Retired Senior Volunteer Program — Heppenheimer as a board member and Orsino as the executive director. RSVP been serving residents in Suffolk since 1972, connecting those 55 and older with an array of volunteer opportunities.
“Pegi and I have known Judge Horowitz for years and his great work for the less fortunate in the county and were extremely interested in how we could all come to a solution for this problem,” Heppenheimer says.
Horowitz’s idea initially was that the senior volunteers at RSVP could be a solution. Yet, says Orsino, guardianship itself would likely prove too great a task for the volunteers; instead, she suggested the volunteers be trained as care monitors, “the eyes and ears” of the official guardian.
In the days after that March 2018 meeting, Heppenheimer drafted a proposal to create a nonprofit to act as the responsible entity for people in need of guardians, effectively reducing the need for attorneys to take on the role. Guardianship Corp, with Heppenheimer as its chief executive and assistance from the Senior Law Project at Touro Law School in Central Islip, partnered with RSVP to tap a pool of potential volunteers.
The group also considered what other Long Island entities might offer support. For example, Stony Brook University nursing students have also begun volunteering as interns for additional support.
A pilot grant of $250,000 to Guardianship Corp, which became an operating organization in October 2018, will fund the program for fiscal year 2019 (April to March), to manage and make decisions for the wards and to provide progress reports to the county. The grant is funded by the state Department of Health and managed by the state's Office of Court Administration.
The services provided by Guardianship Corp can include arranging for food, clothing, shelter and safety; supporting each ward’s well-being, medical stability and mental health; coordinating doctor appointments and related health care and social needs; and managing the individual’s property and financial affairs.
“The bottom line is that through this pilot program, we can help develop the most effective care monitoring, training and working models of using an agency as the guardian with hopes of expanding into the next fiscal year,” says Heppenheimer, who also spent years managing and owning nursing homes in Suffolk.
The problem is more significant on Long Island because its senior population over age 65 increased 33 percent between 2000 and 2016, higher growth than other metropolitan areas in New York State, according to the Rauch Foundation’s Long Island Index 2018 Report.
Becoming a care monitor
In November 2018, the call for volunteers to serve as care monitors began at RSVP. In December, RSVP screened an initial group of 10 volunteers, three of whom later opted out of the program because of personal or family issues.
The volunteers embarked on a two-day training program, led by Heppenheimer and Orsino, to build their awareness of such issues as safety, medical and behavioral concerns, and recognizing when attention is urgently needed for the person in their care.
The training also covered chronic disease, infection control, clinical concerns; role and responsibilities of Guardianship Corp Care Monitors; Alzheimer’s and dementia; levels of care: home care, assisted living, nursing home; and patient reimbursement systems.
Orsino tells the volunteer care monitors that they will be helping an older individual to lead the highest, viable independent living by visiting them twice a month and checking on their well-being, although the state only requires visits every three months. After the visit, the RSVP volunteers must write a report, consisting of a paragraph or two, for the Guardianship Corp personnel.
“You are the care monitor and not the guardian; but you are the eyes and ears to the elder’s situation, whether they live at home or in a nursing facility,” Orsino says she tells RSVP volunteers. The care monitors are not responsible for the court proceedings or reporting, but they are the first line in assessing how well the clients appear to be doing.
Guardianship Corp had taken on 10 clients as of late February. Individual volunteers determine how many clients they can work with; eventually, Heppenheimer says, he envisions two volunteers making each visit to a clients.
“On my first visit with my first ward, Bob Heppenheimer joined me,” explains RSVP volunteer Byalick, who has three clients. “He helped me assess the ward’s situation and needs. Although I was a social worker by trade, I learned a lot during the training program.”
Byalick, who lives in Lake Grove, explains that when she first met the client at Island Nursing and Rehabilitation, she saw he was almost completely incapacitated. He couldn’t speak, so Byalick asked him point to items on a paper to see how he was feeling and indicate if he needed anything.
“He can’t give me details. But after you spend time with someone, you can tell if they are happy or agitated or if they need immediate attention to something bothering him,” Byalick says. “It is hard work, but I enjoy helping people.”
Says Heppenheimer about volunteering: “I volunteered at a nursing home when I was 13 years old. You know there is a dirty little secret in the industry concerning volunteers: They get more out of the experience than the patient.”
Filling a void
Since October 2018, when Guardianship Corp partnered with RSVP, the volunteers have received more than 100 hours of training at both the RSVP offices and at Touro Law School. They join about 850 other RSVP volunteers who do a range of volunteer work through RSVP’s partnering with nonprofit organizations. From soup kitchens, schools, hospitals to Head Start programs, national parks, museums and more, the volunteers, who mostly are 55 and older, have collectively rendered more than 103,567 hours of service to make their communities stronger.
“Unfortunately, no hard statistics exist for the number of unassigned incapacitated adults in need of guardianship throughout Suffolk County or even New York State for that matter,” Heppenheimer says.
But he and Orsino hope that the pilot program will have data at the end of its grant year to evaluate its cost-effectiveness to the guardian and court system and the benefit to the community being assisted.
Heppenheimer credits Judge Horowitz as being a true advocate for the less fortunate: “He saw the increasing need for guardianships for those without funds and sought solutions for this intractable problem. His increasing reliance on pro bono patchwork solutions was driving his motivation for solutions.”
“The creation of Guardianship Corp has filled a huge void and allowed the court to appoint compassionate professionals, volunteers and students whose primary focus is the care, safety and comfort of incapacitated persons,” Horowitz says. “The hope is that this pilot project will serve as a model for other communities and be adopted throughout the state.”
Want to help?
For more information on becoming a care monitor or taking part in RSVP's volunteer opportunities in Suffolk, contact Pegi Orsino, at 631-979-9490, ext. 11, or Betty DeSimone, at 631-979-9490, ext. 12.; or visit rsvpsuffolk.org. Robert Heppenheimer of Guardianship Corp can be contacted at 631-650-2325 or via email at firstname.lastname@example.org.