Only Anecdotal

For the last two years, I have been communicating regularly with beneficiaries of supplemental needs trusts. These trusts, also known as special needs trusts, were created to enable people with disabilities to keep money beyond the small sums allowed by Social Security, Medicaid, and other benefits. It would be normal to assume that as a person accumulates a little more money, disqualification from entitlements should be the norm–because they are no longer needed. Unfortunately, these programs also tend to be the only stepping stones to services that often are not available in any other way–mainly long-term support services in all their varied and sundry manifestations. ABLE accounts address this issue, as well, but they don’t always work, particularly with inheritances and settlements that are larger than the yearly deposit allowances for ABLE accounts.

Of course, sustained eligibility for means-tested programs is only one reason for supplemental needs trusts. The other is that some people have disabilities that make them especially susceptible to predatory financial practices, and a trust can offer some protection. Predatory practices may be the classic scam, an email from a faraway prince or long-lost relative, but more often, they are everyday financial exchanges that have hidden agreements and fees. The predator, then, is your neighborhood mobile phone provider. It’s your bank. It’s your insurance company. The prey is a person who is managing a lot of other things, is easily overwhelmed, is inexperienced in the wily ways of commerce, and is sometimes relieved to talk to the helpful and friendly people who front the sales end of these operations.

Avoiding the lure of the great deal is one of those lessons that we can easily assume everyone absorbed by adulthood, but if this were true, unscrupulous sales practices would not be so common. People fall for bad deals all the time, and we all know it, and we all know that the affects can be devastating. But we also take this practice completely for granted and accept that we can rarely trust financial interactions too much. So, we create some safeguards for vulnerable people. And I am here to tell you that these safeguards often do not work.

By safeguards, I mean instruments of legal authority to manage another person’s finances, notably, a power of attorney (signed and witnessed by a notary public), and a conservatorship (a court order). A power of attorney is not particularly difficult to obtain. It is generally understood by financial institutions and companies, if not widely accepted without some cajoling. A conservatorship or financial guardianship is a much more complicated process, involving medical proof, a day in court, and compelling evidence to a judge that a person needs protection to manage finances. This order should be the golden ticket to helping a protected person manage, but instead, it usually confounds the entities who need to pay attention to it.

I have to admit that in all my days of working with people with disabilities in the past, I started out with a hazy understanding of incapacity and the legal authority that can exist around it. I understood confidentiality and HIPAA regulations, and also understood very quickly that many instruments, like a health care proxy, are invoked only when a person is no longer able to make decisions. I understood that the belligerent nephew of a woman in a nursing home could not use his power of attorney to deny her request for me to visit her (although the nursing home chose to kick me out, anyway). I understood that another woman in another nursing home could keep asking to leave, but the family members who were her guardians could keep her there against her will–and they did. I did see terms tossed around at times, particularly with families in conflict over the decisions their disabled family member was making, but occasionally by facilities, too.

There can be enormous confusion between control and protection. We all take risks on a daily basis, some greater than others. The dignity of risk should not be a luxury for people who need assistance with some things, but too often, the entity providing assistance (or paying for it) also limits that freedom to make decisions. What is safe? How do we determine the need for protection–and how much?

This is a question that can be incredibly difficult to answer, and we see the terrible consequences of overly restrictive decisions over a person’s autonomy, even when the decisions have been made legally. “Nothing about us without us” remains the mantra of disability activists after years of effort, and an ableist culture still dominates much day-to-day life.

There are also many instances where protection is incredibly difficult to obtain, particularly for people with hidden disabilities. For people who are independent in most ways, a guardianship or conservatorship only works when the question is asked. Can this person make this decision? Does the entity interpreting a court order have a responsibility to honor the order?

In my experience, most organizations lean toward understanding legal authority broadly through policies that are the least likely to cause disruption to the organization. When I consider this in the case of, say, a mobile phone company, I know that it is incredibly easy to open a new account. It is also incredibly difficult for a third party to approach that company to announce the existence of a court order and to get anyone selling the plans to respect the court order. In practice, it takes tenacity and considerable effort, paperwork, and follow-up to stop a protected person from entering into agreements and signing contracts and paying for services and fees and equipment… In reality, it is equally difficult to undo what has been done, or to get refunds for money spent. And then, once the court order has been understood and accepted, it is not impossible (but not easy) to stop similar financial agreements from happening again in the future–and it depends entirely on the company, sometimes on the individual representative.

Consumer protection has many loopholes. This is true not just for people with disabilities, but for everyone. Some companies fail to honor agreements, create subscription services that are difficult to cancel, charge fees that are difficult to find in contracts, and deliver products that are not as advertised. Fine print is a trick, and even a careful consumer can trip and get confused. This, of course, can be highly profitable for the companies engaging in unscrupulous practices. In the end, it only matters when laws are broken and companies get caught. Even then, when companies are punished or settle a lawsuit, it is rare that the cheat wasn’t worth it. In this context, it is hardly surprising that many companies choose to ignore court orders of guardianship/conservatorship and powers of attorney. Who is going to enforce the orders? Who even understands them?

I have family members who are vulnerable to predators, and who are under full guardianship to protect them. I know of far more people who have been overprotected and told what they can and cannot do, usually for reasons of “safety.”

I think often about the dignity of risk and how those risks have changed for all of us. We can appreciate that greater efforts are made to ensure that we are who we say we are when working with a government agency, our bank, a utility. As privacy rights have not kept up with technological advances, efforts to make amends often fail to consider all situations–and sometimes rely entirely on the individual with no regard to situations of third-party representation of a person in specific circumstances. In June 2023, for example, the United States Postal Service began to require in-person verification of state-issued identification to complete a change-of-address request. The rule was created to respond to fraudulent address changes, but the procedure was rolled out before the USPS had created workarounds for a court-appointed third party to make the request. In our effort to receive mail on behalf of a protected individual, we finally had to present the individual’s identification–no way around it, even with the postmaster’s assistance. I have not attempted an address change as personal representative for postmortem administration, but I wonder if I would now need to present the identification of the deceased individual to request the change of address for that person’s mail. As the postmaster noted in our efforts last summer, the procedures for identification verification were a work in progress, so maybe procedures have been expanded in the last few months. Still, the USPS presumably has less to gain from inadequately conceived privacy protections than a credit-card company. Delaying communications to verify identity and authority is a profitable obstacle if interest and penalty fees continue to grow in the meanwhile.

As I have worked through processes related to individuals’ relationships with vendors and agencies, I have encountered practices that I suspect veer from what is actually contained in privacy laws. As I have discovered in the Federal Trade Commission’s Standards for Protecting Consumer Information, allowances do exist for legal representatives of individuals. But other than my own personal experience, I have not yet figured out how the FTC standards and other rules governing privacy in retail and other business transactions actually work in the real world. My personal experience, again, leads me to think that many companies hide behind privacy for convenience and corporate advantage, but I intend to figure out if this is just my own cynical bias. More to come.