Last week, the National Council on Disability, or NCD, an independent federal agency, released its second major report on guardianship for people with intellectual and developmental disabilities, sometimes shortened to ID/DD. If we could pull an overarching theme from the report’s 100-plus pages, it may be that we need to step back as a country and take a hard look at whether guardianship is automatically the right protective device for a given person with ID/DD.
Respecting independent preference while protecting from harm
“Turning Rights into Reality: How Guardianship and Alternatives Impact the Autonomy of People with Intellectual and Developmental Disabilities” considers many important issues around a difficult balancing act. On the one hand, we want to promote independence and choice for a person with ID/DD while still making sure there are safety nets in place to prevent exploitation and provide comprehensive care.
The special education factor
The report considers whether guardianship should be the automatic choice. It explains that many public schools advise parents to get guardianship in place when their child receiving special education services turns 18 — a practice dubbed the “school-to-guardianship pipeline.” Special education is typically available until the student turns 22. Parents fear that if they are not guardians, they will not be able to participate in educational planning or have authority to sign off on official educational plans during the 18 to 22 age range when their child is a legal adult.
Once a person is under guardianship, it can last a lifetime, even if his or her ability to make decisions improves. The report encourages consideration of the full range of supports for a disabled loved one to decide on an option that is the least restrictive, while still providing sufficient protections.
Colorado legal advice
A Coloradan concerned about a person with ID/DD who wants to ensure that the vulnerable person receives appropriate personal and financial services and supports should speak with an experienced lawyer who works regularly with this population and related legal issues. The attorney can explain the spectrum of devices available in Colorado with an eye toward the strengths and vulnerabilities of the person of concern.
Disabilities can manifest so differently among different people. Some may be able to make certain kinds of personal decisions independently, while requiring support in other areas. For example, for a person with severe disabilities, maybe a guardianship makes sense, granting the appointed guardian the full range of decision-making powers to see that the ward receives appropriate housing, medical, vocational and other personal services. Another person may have the competence to make their own medical decisions and fill out a living will to appoint someone to step in if they become unable to make medical decisions.
In the financial area, options could include a full conservatorship or something less restrictive like a power of attorney (if the person is able to grant one), a representative payee for Social Security or SSI benefits, or a trustee.
Whatever the decision, those who care about the disabled person can make every effort to understand and incorporate the person’s preferences into all decision making so that as much as possible, the person directs or influences aspects of his or her life.