An esteemed panel made the case for special needs planning that goes beyond standard approaches in a 2020 ASNP Annual Meeting session, “Advanced Strategies for Enhancing Person with Disabilities’ Quality of Life.”  The father-son duo of ASNP Advisory Board member Michael Gilfix and Mark Gilfix of Gilfix & La Poll Associates LLP, based in Palo Alto, California, teamed with Long Island attorney and ASNP co-founder Vincent Russo to steer special needs planners away from one-size-fits-all planning and toward discovering and building into the trust structure what makes each individual unique.

Beware Homogenization

All individuals are not the same, and neither should be trusts, the panelists stressed. Michael Gilfix warned of the “dangers of homogenization,” where a planner may assume too much when told an individual’s specific diagnosis. We may “jump to some conclusions” and pull out standard trust language without fully challenging ourselves to tailor the trust to the person. Michael urged practitioners to ask the individual and others close to him what activities he finds meaningful and look for ways ensure those activities are made available going forward.

Communication and Action

Letters of guidance can communicate an individual’s needs for improving her quality of life. When thoughtfully written, they can provide an enormous amount of useful information about a beneficiary’s hobbies, interests, and preferences.  Mark explained that his firm requires detailed letters of guidance from clients, asks for annual updates, and keeps them in client files. The letters advise the attorney drafting trust documents and help to guide trustees’ future actions.

While letters of guidance communicate a beneficiary’s needs or preferences, putting that guidance into action may benefit from a support team — a trust advisory committee — for the trustee. The more unique the beneficiary’s diagnosis, the more consideration should be given to such a committee. Where finances permit, the committee should consist of advisors such as a researcher or physician with specialized knowledge of the unique illness or disability, a community member with community perspective, a social worker or case manager, and a mental health expert. The number and type of advisors can vary, depending on the trustee’s experience and knowledge, but the goal is “investing in the creativity and integrity of the chosen trustee” helping to enhance the beneficiary’s quality of life.

Trusts and Trustees

Drafting trust documents that grant trustees the latitude they need to meet the beneficiary’s needs is crucial. Michael steered special needs attorneys away from too much reliance on standard language in the trusts they draft. Instead, attorneys are urged to challenge themselves to provide trustees the “extraordinary guidance” necessary to inform them of what is needed in the specific instance, avoiding language that restricts a trustee from providing that which would most improve the beneficiary’s quality of life. Can the trustee spend money on legal drugs such as marijuana or THC? Are trips to visit distant family members or friends outside the scope of the trustee’s authority? Can the trustee pay for the beneficiary to have sex? Concert tickets? Skateboards and hot fudge sundae’s? Professional trustees are conservative by nature and will not stray beyond the narrow language of the trust document. The planner helps by knowing what is most important to the beneficiary; what his needs, desires, and abilities may be, and what the law allows; and then drafting a trust agreement that provides the trustee enough flexibility to offer those life-enhancing experiences, which will evolve through the years.

Selecting the right trustee may be as important as the language of the trust document. Does the trustee have the judgment and the ability to act on behalf of the beneficiary through understanding and creativity? Family members may be a good choice, but not always. There may not be someone in the family with the appropriate skills, aptitude, or time to appropriately fill that role. When looking beyond the family, questions to ask are whether the individual knows the beneficiary, will she go above and beyond in the beneficiary’s best interests, and what succession plan will be in place when it is time for the trustee to move on? “Pooled trusts can fill the void when there is no family member who can step in and [there are] not enough funds for a larger institutional trustee,” said Russo. Pooled trusts have more leverage for managing smaller assets and may be the answer for some.

Safety Net?

Quality of life planning often hinges on the future availability of public benefits. But should we be relying on these systems in the future? asked Michael. The strain on public benefits, especially in light of the coronavirus pandemic, brings into question their future availability. He recommended planning wisely through use of special needs trusts (SNTs) and life insurance.

Housing frequently is the top concern for family members. Uncertain that Section 8 housing will be available, some families start private initiatives, collaborating with others to create group homes. For all group homes, with their benefit comes also the financial challenges that may be presented by low reimbursement rates and finding and retaining quality staff, who often are minimum wage earners. Striking a proper balance between good quality care, oversight, financial resources, and maintaining available housing requires diligence and sensitivity to the realities presented by the challenges, Michael said.

Where a family is considering retention of the family home for the beneficiary, the family needs to account in its estate plan for the future costs of insurance, maintenance, property taxes, and staffing. Wealthier families with a second home may want to gift the second home to caregivers in exchange for their service.

Provide Autonomy

Autonomy is important to quality of life. Where possible, provide the beneficiary with the tools to make decisions about her own finances. Durable powers of attorney, advance directives, ABLE accounts, and first-party SNTs can all play a role here. Avoid guardianships and conservatorships for the beneficiary when that can be done. When it cannot be, then guardianships and conservatorships are critical and should be in place. It is prudent, too, to name standby guardians or conservators who can quickly step in if needed.


Covid-19 has highlighted the devastation that isolation can bring. While particularly pronounced during stay-at-home orders and lockdowns of group homes, isolation is a possibility at any time. Be sure to reach out to caregivers and beneficiaries to provide them the support they need, such as food and household staples. Advocate for group homes.

Gilfix, Gilfix and Russo ended their talk by encouraging planners to help beneficiaries have the “adventure of a life,” and closed with a quotation from Helen Keller:

“Security is mostly a superstition. It does not exist in nature, nor do the children of man as a whole experience it. Avoiding danger is no safer in the long run than outright exposure. Life is either a daring adventure, or nothing.”