This case study originally appeared in the True Link Financial whitepaper: Trends and Innovations in the PSNT World.

In addition to administering pooled and individual Special Needs Trusts, Planned Lifetime Assistance Network of New Jersey (“PLAN|NJ”), has always prioritized providing intensive case management services. 

“When our founders established PLAN|NJ they recognized that many people with disabilities didn’t just need trust administration; they need lifelong support. Our goal in offering case management and advocacy services is to provide a circle of support that helps anticipate challenges before they become crises,” said Ellen Nalven, Executive Director of PLAN|NJ. PLAN|NJ also serves as a Representative Payee for Social Security benefits, legal guardian, and power of attorney. 

The impact of Life Planning

Before PLAN|NJ begins working with a new beneficiary, they guide the family through the design of a comprehensive plan – a LifePLAN. This plan, which is updated regularly, encompasses the legal, financial, home, and community supports that are required to help their loved one thrive. 

“The goal of Life Planning is to enable the person to achieve the highest level of independence and experience the best life possible. For people with disabilities, everyone has a ‘plan’ for their services – things like Individualized Service Plans and Individualized Education Plans. But these plans aren’t person-centered; they are more about outlining the services being provided,” explained Nalven. “Instead, we develop a comprehensive understanding of who the person is, starting from their strengths and capabilities, likes and dislikes, goals and aspirations.”

PLAN|NJ’s LifePLANs are created to be holistic documents and include information on:

• Gifts and talents, current interests and hobbies;
• Hopes and wishes for the future (the individual’s and the family’s);
• Education and work experience;
• Resources that a person has, needs, or would benefit from;
• Housing and employment recommendations;
• Legal and financial protective arrangements; and 
• Friends, family, or others who will help implement the plan.

“You need to start with a comprehensive story about the person. We represent a lot of people who may not speak up for themselves. We need to understand their backgrounds and know them well,” emphasized Nalven. “Our LifePLANs are unique because they are highly personalized. We often think of them as a combination of biography, vision statement, and instruction manual.” 

Families don’t need to have all the answers to these questions from the beginning. Getting started can be the hardest but most important step. Housing is one area where PLAN|NJ works closely with families to help them get a sense of what might be the right fit. They talk through what the ideal setting or location would be, how much support or supervision is needed, whether roommates or in-home care would be appropriate, and the risks and benefits of various options. 

“Talking through legal and financial needs is another area where our expertise can provide a lot of value,” shared Nalven. “Will an individual rely on publicly-funded services or benefits? Do they need help qualifying for those benefits? Will they have a Special Needs Trust, an ABLE account, or both? Do they have a power of attorney or health care proxy, or is guardianship recommended? A family may come to us for trust administration, but that may not be all they need to decide.”

Using the LifePLAN to provide proactive support 

LifePLANs are updated as an individual’s life changes. While these plans can and do inform how PLAN|NJ handles trust administration, case management, and more, families who develop a LifePLAN are not required to sign up for pooled or individual Special Needs Trust Administration, Guardianship, or Representative Payee services.  

Once a LifePLAN is created, families can opt in to Advocacy and Home Visit Monitoring – even before a trust has been funded. With this service, one of PLAN|NJ’s case managers, called a Service Coordinator, will be assigned to visit the home of the individual once a month and build a trusting relationship – this is true whether someone is in a home with 24/7 supervision or with limited support. Having eyes on the individual makes it easier to identify any areas of concern before they become more serious issues. The Service Coordinator can provide crucial feedback to family members who live out of state and may be unable to visit. The Service Coordinator can also function as an emergency contact for both the beneficiary and their family to contact if the need arises.

PLAN|NJ’s Trust Coordinators and Service Coordinators collaborate closely, which can help expedite essential requests. For example, if a Service Coordinator realizes during a visit that the beneficiary needs a new coat, they can contact the Trust Coordinator to find out what the budget should be. Then, on the same day, the Service Coordinator can take the beneficiary to select the coat and submit the receipt to document the purchase. 

Taking on the responsibility from more families 

PLAN|NJ is always seeking to reduce the cost of its services by applying for grants, requesting donations, and leveraging other public funding sources. In the past year, PLAN|NJ served as pro bono legal guardian for eight individuals and provided advocacy and home visits to 60 additional people who live with disabilities, at no cost to them, helping them navigate the complex social service system and obtain needed medical care, housing, and educational services. The pooled trust Charitable Remainder Fund is an important source of funding for these services since the services directly benefit people with disabilities, as the law intended. 

Ultimately, PLAN|NJ wants to help families feel less alone as they determine how best to support their loved ones. PLAN|NJ staff recently wrote a LifePLAN for Ben (name changed), who lives with his aging mother in his family’s home. He told his mom that he is frightened about how he’ll manage if something happens to her. After meeting PLAN|NJ’s case managers, he feels much more relaxed knowing he has someone to call in an emergency, someone who will help him retain his home, job, and hobbies when his mother is no longer able. As Nalven shared, “Families come to us uncertain about what will happen after they are gone. They ask, ‘Who is going to do what I do?’ We can take on the weight of the work from the family and help them feel more supported. After all, there’s nothing more important than knowing someone cares about your child and will make sure they are okay for the long term.”