The question I am asked most often by parents of individuals with special needs is: “What will happen to my child when I can no longer take care of her?” It is a question of uncertain direction most certainly followed by a directed question about the process of petitioning for guardianship. As a parent of a child with significant needs, I understand the fears of other parents and the desires of immortality. As an attorney, I understand the temptation to dive directly into answering my client’s specific question and begin explaining the process of seeking legal guardianship. This is what the client is asking for, right?
The push for guardianship
Understandably, parents have a lot of anxiety over the future of their sons and daughters with disabilities. They worry about their child’s vulnerability and what will happen once they as parents are unable to support them. The assumption for many parents and family members of individuals with special needs is that guardianship over their child is a necessity which arises merely as a function of the child attaining the age of majority. Unfortunately, serious consideration of whether or not to pursue guardianship often does not arise until a child with a disability is at the door of adulthood.
Other parents may feel pressured to seek guardianship. Parents may be given the misinformation that guardianship is necessary for them to continue participation in their child’s special education program and IEP meetings, or even to receive school notices once their son or daughter turns 18. In other situations, the parent’s hand may be forced by their child’s desire to finish high school early rather than accessing their right under special education law to continue their education until age 22. [i] The desire for a parent to have their child finish school as well-prepared as possible for adult life may cause parents to pursue guardianship to compel their child with a disability to continue attending school.
Can I go on a date?
In the name of protecting persons with disabilities, guardians may seek and receive the full powers of guardianship, with broad authority over the person under guardianship. In practice, some guardians may interpret this authority as a blank check to make intrusive decisions over every aspect of the life of the person with a disability. Decisions about issues like dating, where to live, where to go and what to buy become even more difficult as parents/family members turned legal guardians struggle with their own fears and extend their reach of protection.
Guardianship is not intended to be an exercise of control over an individual whose preferences, choices and decisions may simply differ from those of the guardian.[1] There is no doubt that even parents of typically-developing young adults would like to have more control over their children when they turn 18, as the 18 year old who is fully prepared for adulthood is rare. Guardianship powers are not the same as parental rights. Yet courts granting guardianship powers are not in a position to monitor the daily actions of guardians, and persons under guardianship may not be able to understand the limits of guardianship powers, and simply accept the overreaching of well-meaning guardians.
Considering Alternatives to Guardianship
Vermont laws favor the least restrictive method of assisting a person in need of support, whether or not the individual with a disability is under guardianship. Even individuals who are under full guardianship are supposed to be encouraged to make their own decisions and have their wishes and values honored to the greatest possible extent. [2]
The alternatives to guardianship are a less restrictive method of providing support to the individual with a disability and must be considered prior to filing for guardianship. [3] It is important for parents and other family members to understand that these alternatives can provide safeguards for their sons or daughters with disabilities, safeguards that can provide needed support for individuals with disabilities to make choices and decisions and seek a life that meets their needs. Alternatives to guardianship are certainly not sufficient for all individuals with disabilities, as some will need the additional protection that a limited or full guardianship provides. However, these legal tools must be considered prior to the imposition of a more restrictive guardianship.
Getting Ready for Adulthood
A lifetime of constant care and supervision can make any individual less confident and less effective at making independent decisions. In this way, well-meaning parents, caregivers and school teams can inadvertently make the individual with a disability more, rather than less, vulnerable to the challenges of the outside world. With preparation and planning, individuals with cognitive and mental impairments can learn to become more independent adults, and be given the tools, opportunities and confidence to make choices and learn from mistakes, especially within the safe environs of home and school.
One vital step in this process is the proper development and implementation of a transition plan within the student’s Individualized Education Program (IEP). All IEPs for students who turn 16 must include a transition plan,[4] and a properly implemented transition plan can help to increase a person’s ability to function independently after school. With the uncertainty of the non-entitlement world of “adult services,” parents of children and young adults should be strongly encouraged to work with schools to develop IEP and transition plan goals that foster independence. Individuals with disabilities tend to be in highly structured programs with frequent prompting and direction from staff throughout the day. Meaningful goals that will incorporate independent decision-making, personal choice and self-advocacy, rather than constant direction, will better prepare individuals for adulthood, and lessen the need for restrictive guardianships.
In developing transition goals, one goal that I recommend to clients with higher functioning children on IEPs is to create a goal around understanding a Power of Attorney and Advance Health Care Directive. Because some individuals with mild cognitive impairments need more processing time, introducing this goal well in advance of turning 18 could help to ensure the individual has a good understanding of these documents in preparation for signing when he or she becomes an adult.
Provide Support as Needed
Attorneys and advocates who work with individuals with disabilities are very familiar with person first language (i.e. talking about a “person with autism” rather than an “autistic person”). Similarly, person-centered planning is a process of putting the needs of the individual in the center and honoring the person’s preferences, choices and abilities to the extent possible. The following alternatives to Guardianship are examples of requests for support that can be initiated by the individual with a disability. Safeguards and limitations for the individual under each of these options also need to be taken into consideration, and can be written into legal instruments as needed.
Representative Payee
A representative payee is a person or organization that is authorized manage public assistance checks, such as Supplementary Security Income, for a person considered incapable of managing money on their own. An individual who is aware of his or her own shortcomings with managing money may directly request the appointment of a representative payee directly from the agency administering the funds. The Social Security Administration may also appoint a representative payee on their own in cases where there is a reasonable concern about the claimant’s ability to manage money. [5] One obvious limitation of a representative payee is that person’s limited authority only over income from the designated issuing agency, with no authority to manage other sources of income or resources.
Power of Attorney
The Power of Attorney is often an ideal alternative to guardianship as it allows individuals to continue to make independent day-to day decisions while providing the convenience of an agent to assist with their affairs. The flexibility of a Power of Attorney allows the principal to self-identify areas of needed support by the selection and breadth of powers to grant to the agent. An individual may wish to grant broad powers or to limit the powers of an agent to a specific power, such as decisions for school-related matters or assisting with financial affairs.
One concern that may arise is when a parent or other caregiver is the sole, driving force behind initiating and creating the POA on behalf of the person with the disability. Not only is it important that the principal understand the nature of the document in order for it to be validly executed, but it is an important safeguard that the individual understands the power to revoke the document should the principal-agent relationship no longer be needed or advantageous.[6]
Advance Health Care Directive
An advance health care directive enables a person to appoint a health care agent to make broad or selected health care-related decisions according to the principal’s wishes.[7] The principal/individual with a disability needs to be able to make and communicate decisions regarding health care issues and ‘appear’ to understand the document.[8] Because of the history of individuals with disabilities not being able to make health care choices and the inability to foresee all future health care issues, it is especially vital that the selected agent be a person who is aware of the values and beliefs of the individual with the disability.
Special Needs Trusts
A Special Needs Trust can serve as a suitable and private alternative to guardianship. When setting up a special needs trust, attorneys should look beyond creating the trust solely for the benefit of protecting government benefits. A special needs trust can contain provisions that instruct or even require the trustee to monitor the wellbeing of the beneficiary and to periodically assess his or her needs. The document should also provide guidance to the trustee for the beneficiary to receive support as needed to lead as independent a life as possible.
Voluntary Guardianship
An individual who recognizes the need for support with his or her affairs can file for voluntary guardianship with the local Probate Division of the Superior Court.[9] The individual can request support in the areas as needed and can file a motion to revoke the guardianship at any time. Unlike involuntary guardianship, this process does not require an evaluation or a finding from the court that the person is “in need of guardianship.” As a safeguard, however, the court may order an evaluation on the issue of whether the individual understands the nature, extent and consequences of the Voluntary Guardianship. [10]
Limited Involuntary Guardianships
A limited involuntary guardianship is an alternative to full guardianship for people with disabilities who may possess limited decision making capacity.[11] For example, the court may grant guardianship only over an individual’s financial affairs and contracts, but not over medical or legal decision-making. Even within a single power, the court is free to limit the power as dictated by individual circumstances. Even when alternatives alone are not sufficient and guardianship is needed, parents should resist the temptation to automatically ask for full guardianship when an individual may only require assistance in just a few areas.[12]
Conclusion
Independence, self-determination and honoring personal choices are important to all people, including differently abled individuals. Because of the limitation on personal liberty for individuals under guardianship it should only be pursued after reasonable, less restrictive alternatives have been considered. Decisions about alternatives to guardianship or guardianship should never be based on an individual’s diagnosis, but rather on the individual’s needs and strengths.
Originally appeared in the Vermont Bar Journal: Claudia Ines Pringles, Throwing a Lifesaver Without Going Overboard: Considering Alternatives to Guardianship, 37 Vt. B.J. 21 (2011).
[1] 14 V.S.A § 3060 Policy: “Guardianship shall be utilized only as necessary to promote the well-being of the individual and to protect the individual from violations of his or her human and civil rights. It shall be designed to encourage the development and maintenance of maximum self-reliance and independence in the individual and only the least restrictive form of guardianship shall be ordered to the extent required by the individual’s actual mental and adaptive limitations . . . .”
[2] 14 V.S.A. § 3069(f).
[3] 14 V.S.A. § 3063(8) (Requirement for those seeking guardianship to describe the alternatives to guardianship which have been considered and explain why these less restrictive methods were unavailable or unsuitable).
[4] See Vermont Special Education Rule 2363.8(i).
[5] An individual may petition SSA for the removal of a representative payee, but they are typically reluctant to do so without medical confirmation of the individual’s capacity to manage finances.
[6] See 14 V.S.A. § 3503 (d). The key point for a person executing a Power of Attorney is whether he or she is of sound mind and has sufficient capacity at the time the power of attorney was executed.
[7] See 18 V.S.A. § 9702.
[8] 18 V.S.A. § 9702(4).
[9] See 14 V.S.A. § 2671.
[10] 14 V.S.A. § 2671(g). The court may proceed with the petition as if filed as an involuntary guardianship if the court finds that the petitioner does not understand the nature, extent, and consequences of the guardianship and in the court’s opinion requires assistance with the management of his or her personal or financial affairs.
[11] 14 V.S.A. § 3069 Powers of a guardian: “(c)The court shall grant powers to the guardian in the least restrictive manner appropriate to the circumstances of the respondent and consistent with any advance directive. Guardianship powers shall be ordered only to the extent required by the respondent’s actual mental and adaptive limitations. The court shall specify which of the following powers the guardian shall have and may further restrict each power so as to preserve the respondent’s authority to make decisions commensurate with respondent’s ability to do so.”
[12] 14 V.S.A §3063.
[i] See 20 U.S.C. § 1412(a)(1)(A). The IDEA (Individuals with Disabilities Education Act) guarantees a free and appropriate public education (FAPE) to all children with disabilities residing in the state between the ages of 3 and 21, inclusive, including children with disabilities who have been suspended or expelled from school.
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