By Moryt Milo
The one burning question for parents with children who have a mental illness is “Who will take care of my child when I am gone?” Should it be a sibling, relative, or third party? Who will handle the finances, medical needs, public benefits, and day-to-day support? The answer is vexing and complex.
Twenty years ago, this daunting question brought members of NAMI California and the Los Angeles Mental Health Association together to create a solution. They founded the Proxy Parent Foundation to become the “trust protector for family- generated” special needs trusts (SNT) to make sure loved ones with a mental illness and others with brain disorders had a stable future without them. The founders created the PLAN of California Master Pooled Trust which accepts first—and third—party SNTs and conservatively invests and manages the individual’s finances.
The nonprofit describes itself as a “Private Solution to a Public Dilemma.”
As it grew, the foundation expanded to capture the other critical piece of the puzzle—Personal Support Services. This includes assistance with housing, medical care, budgeting, and relationships.
“A Personal Support Specialist, or Proxy Parent, steps into the shoes of a loving family member and acts as a caring advocate and friend,” said Carol Larkin, Director of Client Relations at Proxy Parent Foundation.
Larkin, who has spent four years at the foundation, said the nonprofit has been fortunate in finding people committed to life-long relationships with the beneficiaries.
“We have had several Personal Support Specialists who have outlived their beneficiaries and in spending time with them it was like losing a family member they said,” added Larkin, who has more than a decade of experience in the nonprofit sector, including a background spanning foster youth services, supportive housing, and community partnerships.
Pooled Trust
The foundation’s pooled trust sets itself apart from others. Enrollment in the trust doesn’t require court approval and there is no asset minimum. Financial institutions can require an investment minimum that’s too high. Management fees can also be significant.
The foundation’s Board of Directors understands first-hand the challenges of individuals with brain disorders and works exclusively with this demographic. They rely solely on the revenues generated from trust fees for operational costs and services along with donations. The goal is to make sure the beneficiaries are financially secure.
“It’s the only pooled trust in the state that offers a more hands-on approach,” Larkin said.
Executive Director Carmen Bowen emphasized the foundation’s responsibility to its beneficiaries at the June 9 NAMI General Meeting. She said as a nonprofit there are a lot of checks and balances Proxy Parent has to adhere to.
“We are very strict about that and have other government entities that can audit us at any time,” said Bowen, who is also a Proxy Parent trustee, with more than 20 years of leadership experience spanning nonprofit, education, and community-based organizations.
“We have several different people that [are responsible for parts of the trust], so no one person has complete autonomy over anything, and we can only use the money for the benefits of the beneficiary,” said Bowen, who is a lifelong advocate for individuals with developmental disabilities and underserved communities.
A family can move their existing SNT into the pooled trust if they don’t want to be the trustee. But this can only happen if the special needs trust is not funded. Once it’s funded, the terms are irrevocable.
Larkin reiterated how important it is for families to consider their options early as they prepare for the future. She said one out of three calls she fields comes from a sibling, cousin, aunt, or uncle who is the trustee of a funded SNT and wants to remove themselves from the responsibility. But it’s too late.
“It’s important to understand once a trust is funded it’s no longer a piece of paper. It’s irrevocable and you can’t make any more changes, such as who will be the trustee or manager of the assets without court approval,” Larkin said.
This requires assistance from an attorney which can be costly, she added.
Other Benefits
For those who have a SNT outside the Proxy Parent Foundation, the nonprofit also has a Pay-As-You-Go Program. This service works well for families with an immediate need for support.
One family needed help with their son signing up for benefits. Another asked for help moving a family member into a new housing arrangement. Once these issues were resolved, Proxy Parent pulled back. But if future needs arise, the families can reach out anytime.
Another aspect that makes the foundation strong is the diverse backgrounds of the board members—science, mental health, finance, and legal—with a common bond. They either have family members with mental illness or have worked with individuals with disabilities.
It’s a model of what a dedicated community of members and disability advocates can accomplish, Larkin said.
“Our Personal Support Services will give you peace of mind and help you answer the question, who will care when I am not there?” she said.
To watch the complete presentation, go to www.youtube.com/@NamiSantaclaraOrg.
To learn more about Proxy Parent Foundation, click here.
