Q. My 30 year old cousin, Donnie, is intellectually disabled. He works at the Wendy’s near my house, serving burgers and greeting customers with a smile. He has a bank account, and saves most of the money he earns, makes a mean chili, and drives to work each day. Yet, his mother has guardianship over him, leaving him with less rights than a convicted felon.
All Donnie wants is to be independent and the interesting twist in his situation is that his mother agrees with him. She wants him to find the apartment he’s been saving for, and to be independent, as he wishes. However, the court disagrees, and will not remove the guardianship. In addition, if anything happened to his mother, Donnie’s guardianship would revert to the courts, and he could be forced out of his mother’s house and into a group home, be forced to quit the job he loves, be cut off from friends, and even have all his passwords to his favorite websites blocked.
This is unbelievable! Is this the norm? What is being done to help people like him?
A. Guardianship is an extreme form of intervention in another person’s life, that is typically used for those who are mentally incapacitated due to dementia, brain injury, mental illness, or other disability. For an incapacitated adult, a “guardian” is a person that is appointed by the court to be responsible for another person’s personal affairs, including making decisions regarding their support, care, health, safety, habilitation, education, therapeutic treatment, and residence.
The law does not make it easy for someone to obtain guardianship, unless the person they are trying to help really needs it, because doing so takes away so many legal rights of the protected person, including control over personal and/or financial decisions for an indefinite, often permanent period of time. As you can see in the situation with your cousin, once established, guardianship can be quite difficult to revoke. This is why I advise that guardianship should only be used as a last resort.
Currently, there is a nationwide movement to replace overbearing guardianships with something called Supported Decision-Making (SDM). SDM is designed to make the person with cognitive challenges “the ultimate decision-maker,” while still providing the support the person needs to thrive, according to the National Guardianship Association.
SDM offers an opportunity for many adults with disabilities to make their own decisions, consistent with fundamental human and legal rights. For example, with SDM, someone such as your cousin would be able to make life decisions for himself, while still receiving the help he needs to understand the choices he faces. All this, without the need for undue or overbroad guardianship.
Introduced as part of the United Nations Convention on the Rights of Persons with Disabilities (CRPD), SDM can be a key element for improving experiences and opportunities for many people with different life conditions. In fact, according to the American Bar Association website, under Article 12 of the UN CRPD, people with disabilities enjoy “legal capacity to act on an equal basis with others in all aspects of life. States have a duty to provide persons with disabilities access to the supports they may require to exercise their legal capacity. States must ensure that these measures provide for safeguards to prevent abuse that are both proportional and tailored to the individual’s circumstances.”
The legal group that met at the UN CRPD came to a consensus that SDM, with adequate resources, must be put in place before guardianship, and that guardianship should only be considered if SDM has not succeeded. Unfortunately, SDM is generally not known to the general public, policymakers, judges, and many lawyers. A model for SDM currently exists in British Columbia, however, there is generally no clear policy framework in the U.S. Therefore, guardianship laws and practice still dominates in this country. The challenge for leaders is to identify the steps they can take within their scope of influence AND work with others to create new SDM policies, systems and practices.
What To Do Until SDM Becomes Mainsteam
Very few people want to have court oversight and be unable to make decisions without getting someone else’s permission. For your cousin, I sincerely hope SDM becomes available in this country. For others, not wanting their rights taken away is a big reason why proper legal planning is so important. The very same protections achieved through guardianship can usually be achieved without any court proceeding, through the use of good Power of Attorney documents for medical and financial decisions. If you and your loved ones don’t already have up-to-date power of attorney documents in place, then it’s critical to do so right away.
Please click here for additional details about guardianship and less restrictive alternatives.
Special Needs Planning
Until something can be done to help your cousin regain his independence, it is important for his family to plan for his future.
A special needs trust is an essential tool to protect a disabled individual’s financial future. Also known as Supplemental Needs Trusts, this type of trust preserves legal eligibility for federal and state benefits by keeping assets out of the disabled person’s name while still allowing those assets to be used to benefit the person with special needs. Read more here.
When it comes to special needs planning and guardianship, we can guide families through this process and discuss the best strategies/alternatives. Please call us to make an appointment for a no-cost consultation:
Fairfax Elder Law: 703-691-1888
Fredericksburg Elder Law: 540-479-1435
Rockville Elder Law: 301-519-8041
DC Elder Law: 202-587-2797