Advocating for Beneficiaries with Disabilities: Start with their Strengths
Ellen Nalven, executive director of Planned Lifetime Assistance Network of NJ, is a recipient of True Link’s annual grant that recognizes those promoting best practices and robust systems of oversight in guardianship. Nominations for next year’s grantees will open in February, 2021.
When I think about my life’s purpose, it can be summed up as this: I am a voice for people with disabilities.
For the last 15 years, I’ve worked at a nonprofit, Planned Lifetime Assistance Network of NJ (PLAN/NJ) that acts as a corporate trustee for Special Needs Trusts. I serve as legal guardian for 36 beneficiaries and advocate for their core needs, whether they need a little or a lot of support, so they can achieve the highest quality of life possible.
I also help families plan for the future so they will feel secure that their loved ones are safe. My job is to provide answers to the difficult question: “Who will care for my loved one when I am gone?” Unfortunately, the toll of COVID-19 has given new urgency to this question. This is a time when parents or caregivers of people with disabilities are thinking more about their own mortality. As such, this is an opportunity to nudge them to put a plan in place for their loved ones’ care.
As the recipient of True Link’s grant to promote guardianship education, I’m on a mission to help families understand the importance of life planning, rather than just legal planning. The difference is profound: In life planning, we educate families about the nitty-gritty of benefits and the services we offer that are needed by people with all kinds of disabilities.
But we also strive to understand the big picture of who a beneficiary is so we can provide the best possible guidance to connect them to the right resources and help them enjoy full and satisfying lives.
We ask the questions: Who are they? What keeps them well? What are they good at? These answers help us learn how to advocate for our beneficiaries throughout their lifetimes, as their priorities and needs change. I remember becoming a guardian to a 23-year-old man whose mother unexpectedly died within six weeks of being diagnosed with leukemia. Luckily, his grandmother was still alive to help us get to know him.
Seeing the Whole Person
Through placing more than 1,000 people with physical, intellectual and psychological disabilities in the right jobs in my past work, I’ve learned the value of asking “What are they good at?” While this may sound like a cursory question, it’s one that many who care for people with disabilities fail to ask. That’s unfortunate because the insights from this question are critical; it prompts us to see beneficiaries’ strengths and abilities instead of limitations. Those are the clues on how to fight for their dignity.
Adopting this person-centered philosophy has helped me advocate for people by identifying their gifts, so they can feel good about contributing their talents to the workplace. I remember standing up for a woman who told me she wanted to work in a cat toy factory, rather than pursue the clerical work that a vocational counselor was pushing. Believe it or not, we were able to find a perfect match for her. I’m also proud of the time I found a good fit for a non-verbal person who had a green thumb. He became a valued employee at a local florist, where he watered, pruned and labeled flowers and plants.
Why We Do What We Do
As a guardian, my mission is to educate families about how to protect their loved ones from harm while preserving their rights, choices and dignity. There’s a misconception that beneficiaries need to surrender their autonomy, but part of my job is helping people understand that a guardian is required to promote self-determination and informed consent for people under guardianship. That involves using multiple forms of communication and taking the time needed to include the individual in decisions regarding housing, medical care, and any other aspect of life that arises.
I can’t think of another career in which you can have such an important impact on another person’s life. It’s a job that demands compassion, creativity and integrity. We are the voice of the vulnerable. Through our work, we are truly making the world a better place.