Utilizing Article 81 Guardianship in New York for Those Diagnosed with Autism Spectrum Disorder
By: Anthony J. Enea, Esq.
After years of working with the parents of children diagnosed with Autism Spectrum Disorder (“ASD”), I have learned that ASD refers to a range of Neurodevelopment disorders which most frequently manifest themselves as both verbal and non verbal communication difficulties, social impairments and repetitive, restricted and stereotyped patterns of behavior. Autism or “classical” ASD is the most severe form of ASD. Milder forms of ASD include Aspergers syndrome, childhood disintegrative disorder and pervasive development disorder not otherwise specified (PDD-NOS). 1
It has been estimated that 1 out of every 88 children age 8 will have an ASD, and that males are four times as likely to have an ASD than females.2 ASD effects people of all races, ethnicity and socio-economic groups. Sadly, there is no known cure for ASD at this time, however much progress has been made in diagnosing ASD, potential genetic predispositions for ASD and the treatment of ASD though the use of early behavioral and educational intervention programs.
Unfortunately, in addition to the many challenges the parents of an ASD child may face, they will also eventually be faced with the issue of whether or not they will need to seek legal guardianship for their ASD child who has reached the age of 18. At age 18, a child in New York is legally considered to be an adult.3 Thus, a parent is no longer the legal guardian of the child once he or she has reached the age of 18. This regularly presents a predicament for the parent of an ASD child that requires some level of intervention and assistance by the parent with respect to decision making for health care and therapeutic issues, financial issues, and the day to day management of ASD child’s affairs.
I was recently consulted by the parent of a 21 year old ASD child who had become extremely frustrated with the difficulties she was encountering in assisting her child with obtaining varied supportive and medical services since the child had reached adulthood. Her frustration had reached the boiling point when she was unable to receive any information for 2 weeks as to where the child had been hospitalized due to the facility’s need to comply with HIPAA and because her child was an adult. 4 While a legal guardianship may not be appropriate or necessary for every young adult diagnosed with ASD, there are numerous cases where it is both an appropriate and necessary form of intervention.
In deciding whether or not to seek legal guardianship and what form of guardianship (personal, property or both) is most suitable for the ASD child in question there a number of factors to be considered.
Obviously, one of the first issues that must be addressed is what level of assistance as to personal and property decision making will the ASD child necessitate both presently and in the future. Does the child have the requisite capacity to manage his personal, medical and financial affairs and to communicate his or her wishes with respect thereto. This assessment should involve a detailed review of the ASD child’s medical history and any assessments made as to his or her limitations with respect thereto.
Section 81.02 of the Mental Hygiene Law (MHL) requires that the appointment of a guardian must be “necessary” to meet the alleged incapacitated person’s (AIP) needs for property management, personal care or both. In deciding whether a guardian is necessary §81.02(a)(2) specifically provides that the Court shall consider the sufficiency and reliability of available resources as defined in Section §81.03 to provide for personal needs or property management without the appointment of a guardian. §81.03(e) defines available resources to mean “resources such as, but not limited to, visiting nurses, homemakers, home health aides, adult day care and residential care facilities”. The definition of “resources” also includes powers of attorney, health care proxies, trusts, representative and protective payees.5
Thus, if an adult ASD child (over the age of 18) has the capacity to execute a Durable Power of Attorney (POA) and Health Care Proxy Form (HCP), the need for the appointment of a guardian may be obviated, especially, if these documents are drafted in a sufficiently broad enough manner to meet the present and possible future needs of the ASD child.
One difficulty in assessing the needs of an ASD child is that behavioral and social interactive issues can often be a major factor with respect to his or her needs. Thus, any pre-guardianship assessment should not only focus on the ASD child’s ability to independently perform activities of daily living (feeding, dressing, cooking, bathing and toileting), but also on his or her ability to socially interact, such as independently go food and clothing shopping, ability to speak clearly, read and understand bills, bank statements, use a credit card and to make change. There are for example many ASD adults that can reside independently in a home or apartment, make decisions as to their travel and food needs, but, are unable to maintain and balance a checking account or handle their financial affairs. In determining the need for a guardian it is most important to be able to fashion a guardianship that will allow the ASD child the greatest amount of freedom, independence and flexibility while also insuring that his or her personal and property management needs are adequately provided for.
Section §81.03(d) of the MHL provides that one of the goals of Article 81 is that the guardianship should be the “least restrictive form of intervention”. The guardian should have only those powers necessary to assist the incapacitated person to compensate for limitations and to allow the person the greatest amount of independence and self determination in light of the person’s ability to appreciate and understand his or her functional limitations. The Court in appointing a guardian is guided by the concept of least restrictive form of intervention.
This inherent ability within Article 81 of the MHL to customize and tailor the rights and duties of a guardian while still allowing the AIP with the self determination and independence suitable for his or her incapacities is what makes an Article 81 Guardianship proceeding significantly more desirable than an Article 17-A proceeding under the Surrogate’s Court Procedure Act (SCPA), for the vast majority of ASD cases. While the pros and cons of each proceeding has been the topic of many an article, it will not be the focus herein.6
While a guardianship for “developmentally disabled person” would be appropriate both under Article 81 of the MHL or 17-a of the SCPA, unfortunately, 17-A of the SCPA does not permit tailoring and limiting the authority of the guardian to the needs of the AIP. This distinction was highlighted in Matter of John J. H.7 Surrogate, Kristen Booth Glen of New York County in denying the Petition of the parents of an autistic child who sought the authority to sell the child’s artwork and donate the proceeds as a charitable contribution as part of their guardianship application, held that the Surrogate’s Court in an Article 17-A proceeding lacked the power to grant anything other than a plenary property guardianship, which did not include blanket gift making authority. Surrogate Glen noted what was already well known in the guardianship community that Article 17-A was “a blunt instrument” that did not permit any of the individualized tailoring that was available in Article 81. Thus, the Petition was withdrawn by the child’s parents and an Article 81 proceeding was commenced.
In the past there was some question whether an Article 81 proceeding could be utilized for a developmentally disabled minor child, however, in Matter of Cruz (2001), Justice Diane A. Lebedeff of the Supreme Court of New York County held that the Article 81 provides no indication that it should not apply to minor children. Justice Lebedeff opined “There is sufficient, albeit slight, affirmative language in the statute which supports its application to minors, and no language which preludes such application.” She further opined that “Where it is clear that the child’s functional limitation are permanent, there is good reason to pursue an Article 81 guardianship from the beginning rather than first utilizing SCPA 17 or 17-A during childhood then commencing an Article 81 guardianship at adulthood”.8 In Cruz, the child had substantial brain injury during birth, and the child’s medical malpractice claim had been settled for $3.5 million.
While the minor’s parents are the legal guardians of the minor’s person and can make decisions relevant to his or her person, it is generally when the minor child has inherited or recovered monies that he or she will require a guardianship for his or her property.9
Section §81.21 of the MHL delineates the powers granted to a guardian that are necessary and sufficient to manage the property and financial affairs of the AIP and those depending upon the AIP. The guardian must afford the incapacitated person the greatest amount of independence and self determination with respect to property management in light of that person’s functional level, understanding and appreciation of his or her functional limitations and personal wishes, preferences and desires with regard to managing the activities of daily living.
Section §81.21(a) permits precisely the requisite level of tailoring of property management powers to the Guardian that is necessary and appropriate for an ASD child. The following are illustrative of some of the property management powers granted under §81.21(a): 10
1. Make gifts;
2. Enter into contracts;
3. Create revocable or irrevocable trusts or property (would include a Special Needs Trust) which may extend beyond the incapacity or life of the incapacitated person;
4. Provide support for persons dependant upon the incapacitated person for support;
5. Marshall Assets;
6. Pay such bills as are reasonably necessary to maintain the incapacitated person;
7. Apply for government and private benefits;
8. Lease and/or purchase a residence;
9. Retain accountants and attorneys;
10. Defend or maintain any judicial action.11
Section§81.22 delineates the personal needs powers granted to the Guardian. Again, as in §81.21 these powers are to be fashioned so as to afford the incapacitated person the greatest amount of independence and self determination with respect to his or her personal needs. The following is illustrative of some of the personal needs powers granted under §81.22:
1. Determine who shall provide personal care and assistance;
2. Make decisions regarding social environment and other social aspects of the life of the incapacitated person (IP);
3. Determine whether the IP should travel;
4. Determine whether the IP should possess a license to drive;
5. Authorize access to a release of confidential records;
6. Make decisions regarding education;
7. Apply for government and private benefits;
8. To consent to or refuse generally accepted routine or major medical or dental treatment;
9. Close the place of abode12.
It should be noted that under §81.22 (b) no guardian may:
(a) Consent to the voluntary formal or informal admission of the IP to a mental hygiene facility under Article 9 or 15 of this chapter or to a chemical dependence facility under Article 22; and
(b) Revoke any appointment or delegation made by the incapacitated person such as a Power of Attorney, health care proxy or Living Will.13
In spite of the above stated advantages of utilizing Article 81 for an ASD child, there is still a time and place for an Article 17-A proceeding. Most often, it is used for a person who will not be able to care for himself or herself due to a permanent and unchanging condition.
Once the decision has been made to pursue an Article 81 Guardianship for the ASD child there are a number of important decisions and issues that will need to be addressed prior to the filing of the Petition. For example:
1. Who is going to be the Guardian? Both parents or just one parent (Most commonly both). Will a standby Guardian be selected?
2. To what extent will the Guardian need powers over the person and property of an ASD child?
3. Has the Guardianship been discussed with the ASD child? Does he or she understand the nature of the proceeding and has he or she expressed an opinion of the powers being sought by the Guardian?;
4. Has there been a consultation with those professionals most familiar with the needs of the ASD child to assess what levels of independence are most appropriate for the child;
5. Try to insure that the ASD child will be comfortable at the Guardianship hearing. Explain to the child as best as possible some of the legal terms utilized at the hearing such as “incapacity”, “powers over the property and person”;
6. Will as part of the Guardianship Proceeding it be necessary to seek to have approved a Self Settled Special Needs Trust for the ASD child? This is generally necessary if the ASD child has assets or will be receiving assets (inheritance, suit or settlement) that will impact his or her eligibility for such programs as Medicaid and/or Supplemental Social Security Income (SSI).
7. Is the ASD child presently enrolled in any Federal or State programs such as Medicaid and/or SSI? Does Medicaid need to be given notice of the Guardianship Proceeding? ;
8. Is there a likelihood that the Guardian or ASD child may be residing out of state? If so, it may be advisable to address this likelihood in the Guardianship Petition and obtain and necessary powers with respect thereto.
In conclusion, clearly the decision to seek on Article 81 Guardianship for an ASD child is one that must be thoroughly evaluated prior to doing so. It is a decision that will have a far reaching and profound impact on the life of an ASD child and his or her parents.
However because of the nature of an Article 81 proceeding, and the inherent flexibility within Article 81, it is a decision that can be tailored and fashioned to the needs and concerns of both the parent and child while at the same time being a decision that can be modified or revoked at a later date if a change in circumstances has occurred. It can truly help insure the health and financial well being of the ASD child for the balance of his or her lifetime if properly fashioned.
*Anthony J. Enea, Esq. is the managing member of the firm of Enea, Scanlan & Sirignano, LLP of White Plains, New York. His office is centrally located in White Plains and he also has an office in Somers, New York. Mr. Enea focuses his practice on Elder Law, Guardianships, Medicaid Planning and Applications, Wills, Trusts and Estates.
Mr. Enea is the Chair of the Elder Law Section of the New York State Bar Association.
Mr. Enea is a Past President and a Founding Member of the New York Chapter of the National Academy of Elder Law Attorneys (NAELA). He is also a member of the Council of Advanced Practitioners of NAELA.
Mr. Enea is a Past President of the Westchester County Bar Association and the founding Co-Chair of its Elder Law Committee in 1992.
Mr. Enea is a Vice President of the Westchester County Bar Foundation and the Columbian Lawyers Association of Westchester County.
Mr. Enea wishes to acknowledge the assistance of his Senior Associate and Sara Meyers.
1 See Autism Fact Sheet of National Institute of Neurological Disorders
2 Centers for Disease Control and Prevention: Morbidity and Morality Weekly Report 3/30/12
3 General Obligations Law §1-202 (2012)
4 Health Insurance Portability and Accountability Act of 2005 (HIPAA) §45 CFR 164.512(b)
5 Section 81.02(a)(2), 81.03 and 81.03(a) of the Mental Hygiene Law
6 Article 17-A of the Surrogates Court Procedure Act
7 27 Misc.3d 705 [Surrogates Court, New York County 2010]
8 Matter of Cruz 2001 NY Slip Op 400 83U [Supreme Court, New York County 2001]
9 Matter of Mede, 177 Misc.2d 974 ; SCPA§2220
10 Section 81.21 and Section 81.21 (a) of the Mental Hygiene Law
11 Section 8.21(a) of the Mental Hygiene Law
12 Section 81.22 of the Mental Hygiene Law
13 Section 81.22 (b) of the Mental Hygiene Law