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Topics:
Health & Families and Gender (cross-referenced)
Orphan
Project Develops Community and Legal Support Systems for Parents
and Foster Parents
The Orphan
Project, founded in New York City in 1991, has developed a collaborative
model with agencies, hospitals, social service and volunteer groups
to provide community and family supports, as well as policy changes,
to meet the needs of the entire spectrum of children affected
by AIDS—from dying infants to healthy adolescents. Grassroots
groups, such as Mothers of Children with AIDS (MOCA), and large
medical institutions, such as Montefiori Medical Center, have
worked to develop forms of service and a standby guardian law
that empower mothers with AIDS and foster parents in providing
care and removing bureaucratic impediments. Stories
and case study plus.
Contents
Story:
A
Profile of Ruth Bezares, founder of Mothers of Children with AIDS
Story: The Orphan Project
Case study plus: New
York State's Standby Guardian Law
Story:
Profile of Ruth Bezares
Story
provided by Carol Levine and Gary Stein, The Orphan Project, and
excerpted from Orphans of the HIV Epidemic, copyright 1994 by
the Orphan Project.
"If
we are going to lean on women to take care of children and grandchildren,
we have to make it easier for them."
-
Ruth Bezares
Ruth Bezares's
personal and professional life is intimately connected with AIDS.
She lost her daughter to the epidemic in 1992 and has cared for
her five-year-old granddaughter since the child's birth. "It was
a big shock to learn that my daughter was infected," Ms. Bezares
recalls grimly. "I had a friend with AIDS, so I knew something
about the disease, but I was very concerned about how my family
would perceive it. On some earlier occasions, I heard a family
member say, 'People with AIDS deserve what happens to them,' and
I was fearful of encountering that sort of reaction again. Even
my pediatrician warned me to expect discrimination."
In 1990,
the presures of her own situation led Ms. Bezares to research
the services available to caregivers of people with AIDS—and
to discover they were almost nonexistent. Within a year, she had
founded Mothers of Children with AIDS (MOCA) with the help of
a small grant from the New York State AIDS Institute and the donation
of free office space from the Episcopal Mission Society. The agency
now runs two support groups for caregivers, one in English and
one in Spanish, and maintains referral lists for clients who need
additional services. Another primary function is to provide education
about the course of AIDS. "People need to understand the trauma
of living with AIDS or surviving the death of a parent", says
Ms. Bezares. "A client will say to me, 'I don't understand my
son. One day he looks well, the next day he looks like he is dying.
Sometimes he is rude or he screams at me'. They need to know that
this is typical of the disease."
At support
group meetings, the absence of appropriate services, and the challenge
of accessing the ones that exist, is discussed over and over again.
"In experiencing the issue of HIV and AIDS with my own daughter,
and certainly in listening to the moms who come to my group, I
know the support systems just aren't there", says Ms. Bezares.
"If we are going to lean on women to take care of children and
grandchildren, we have to make it easier for them. What the system
does now is to make it harder."
Before any
new programs are designed and implemented, however, Ms. Bezares
believes passionately in the need to consult the community of
people who will be affected. "You can't take old models and try
to fit us into them. Programs have to make sense to the people
they are serving. Service providers, hospitals and doctors cannot
speak for us. They have to listen to us. What they can do is to
provide a service based on what we tell them our needs are, not
based on some model that was created for other purposes. Otherwise,
we are just spinning our wheels."
The shortcomings
of the foster care system is a source of particular frustration
for Ms. Bezares. "The system hasn't caught up with today's realities.
There is a whole generation of children in foster care who were
born under the AIDS epidemic, but old procedures are still being
used." In particular, she rails against the absence of authority
for foster parents. "We are not people to be used for the convenience
of the system. Our homes are not places where kids can be dumped.
If a foster parent is good enough and trusted enough to care for
a child, then she has to be able to participate in the decision-making
process. Right now, we are not allowed that right and that is
unconscionable."
When Ruth
Bezares takes off her professional hat, she faces the challenges
of AIDS on a very personal level. Her granddaughter, who is not
HIV-infected, draws in an HIV coloring book and hears the subject
discussed in meetings in their home. Although she is not old enough
to understand the full dimensions of AIDS and what it means to
her life, she does know that her mother was very ill before her
death and sometimes the little girl says, "I have two mommies."
Through her efforts to make the system more responsive, Ruth Bezares
hopes to ease, at least in some small ways, the struggles that
may lie before her and others.
Story:
The Orphan Project
Project
story provided by Bruce Jennings, Executive Director, the Hastings
Center, and a member of the CPN Health editorial team.
The importance
of understanding terminal illness as a public health issues and
listening to community voices is illustrated by the work of The
Orphan Project in New York City. As the AIDS epidemic has spread
to IV drug users and their sexual partners, terminal illness has
entered the lives of many single mothers with infants and young
children. Realizing their impending death, one of the most poignant
kinds of suffering faced by these young women is the uncertain
fate of their children.
Many AIDS
mothers wish to make guardianship arrangements before they die
and before the progress of their disease renders them too ill
to be involved actively in the selection of the person(s) who
will rear their child. When they have relatives or a support system
of friends, they may have someone in mind and would like to designate
that person as the child's future guardian. When they lack family
and friends, the pain of not knowing who will care for their child
is not less great, and they need organized support in the community
to put them in touch with potential guardians.
Working
with HIV positive women, and with other community and professional
organizations in New York, The Orphan Project in collaboration
with the Montefiori Medical Center in the Bronx was able to identify
this situation as one of the central caregiving needs of AIDS
patients. This community coalition—those working directly
with underserved populations—successfully pressed for administrative
and legal changes in the system of designating guardians for orphaned
children.
These changes
make it possible to undertake advance guardianship proceedings
so that AIDS mothers could be personally involved, could exercise
some degree of empowerment and control over this most precious
and important aspect of their lives, and could be comforted and
reassured that good provision had been made for their children.
The New
York State Standby Guardian Act has already served as a model
for similar legislation in several states. Not limited to AIDS
patients alone, this approach to advance guardianship arrangements
has also met the needs of terminal cancer patients and those with
severe, progressive disabilities.
Case
Study Plus: New York State's Standby Guardian Law
by
Gary Stein, Policy Director, The Orphan Project
In cooperation with: Carol
Levine, Executive Director, The Orphan Project
Alice
Herb, Assistant Professor, State University of New York, Health
Science Center-Brooklyn. June 16, 1994
Planning
for the future care and custody of their children is one of the
most difficult decisions facing parents with HIV/AIDS. The New
York State Standby Guardian Law (Surrogate's Court Procedures
Act, section 1726), which was initiated by attorneys working with
HIV-infected parents* in collaboration with Governor Mario Cuomo's
legal staff and enacted in June 1992, reinforced the right of
parents to retain custody of their children and to determine who
will care for them when they are no longer able to do so. Prior
to the passage of this precedent-setting law, parents desiring
to appoint a future guardian for their children named that person
in either a will or deed, which delayed the judicial approval
of this designation until after the parent's death. During the
parent's lifetime, he or she could file a guardianship petition,
which often required giving up custodial rights—an unsatisfactory
and even insensitive approach. The Standby Guardian Law combined
these alternatives. It permits parents to appoint a guardian for
their children during their lifetime, yet becomes effective only
upon the parent's death, physical debilitation or mental incapacity,
or consent.
Although
the Standby Guardian Law provided an important new option for
parents wishing to develop a custody plan, it quickly became apparent
that more needed to be done to promote its use and that some "fine-tuning"
of the statutory language was needed. To that end, on October
18, 1993, The Orphan Project, working with the coalition of AIDS
attorneys, sponsored a forum—attended by attorneys, family
court judges and surrogates, agency administrators, mental health
and child welfare workers, case managers, and family members—to
examine New York's experience in implementing the Standby Guardian
Law and to issue guidance to further its appropriate use. Evolving
from this meeting were recommendations for: (1) amendments to
broaden the application of and clarify the Standby Guardian Law;
(2) professional education on custody planning for attorneys,
judges and surrogates, case managers, and mental health workers;
(3) community outreach and consumer training to increase awareness
among parents on the benefits of custody planning; (4) procedural
guidelines to promote implementation of the law; and (5) further
policy analysis on the financial implications of custody plans.
Amendments
to the N.Y.S. Standby Guardian Law
[The first
three amendments proposed in the following section were passed
by the New York State Legislature in June 1994 and signed by Gov.
Mario Cuomo on July 20, 1994. They became effective immediately.
The full text of the amended law is attached to this report as
an Appendix.]
The Standby
Guardian Law, which amended the Surrogate's Court Procedure Act,
has been a useful custody planning tool for parents contemplating
their children's future care. The law has enabled parents to formalize
the choice of a guardian for their children, while allowing them
to continue their parental responsibilities unimpaired. However,
attorneys representing parents report that some provisions would
benefit from clarification, both to assist them and judges hearing
standby guardian cases. In addition, minor substantive changes
would appropriately broaden the class of parents and other caregivers
who could benefit from the law. These substantive and technical
modifications are reviewed below.**
1.
Statutory application. The current law requires a
parent's physician to document "that there is a significant risk
that the [parent] ... will become incapacitated or die ... within
two years of the filing of the [standby guardian] petition," as
well as the medical basis for this claim (section 1726(3)(b)(ii)).
Imposing time parameters on the lives of parents attempting to
use the Standby Guardian Law creates two unnecessary barriers.
First, determining the length of time an ill person, especially
one with AIDS, has to live is fraught with uncertainty and unnecessarily
places upon physicians the difficult responsibility of making
a precise judgment. Second, the time limitation forces parents
who might otherwise establish a standby guardianship to delay
formalizing their custody plan. Such delays contradict the recommendations
of attorneys, social workers, and other AIDS professionals that
parents with HIV/AIDS consider custody planning options and formalize
them early in their illness. Any parent can designate a standby
guardian but the courts will not approve the designation unless
there is an actual need because of illness or unless the case
comes before the couret after the parent's death.
A functional
definition of disability, rather than a time limitation, eliminates
difficult medical speculation on patients' remaining years and
promotes early custody planning by parents. It
is recommended that the Standby Guardian Law be amended to apply
to parents suffering from a progressive, chronic condition or
an irreversible, fatal illness.
2.
Appointing successor guardians. Under the Standby Guardian
Law, only parents may appoint guardians for their children. However,
experience has shown that this provision may not meet the needs
of children and youth orphaned by AIDS and their new caregivers.
For example, in many families grandparents, who may be elderly
or have serious chronic conditions, or other relatives or friends,
who may themselves be HIV-infected, are appointed as standby guardians.
However, these elderly or ill caregivers, who will probably be
best able to promote the interests of their wards, are legally
unable to plan for the children's futures should they themselves
become incapacitated or die. To permit
guardians to develop care plans, it is recommended that the law
be amended to permit duly appointed standby guardians to nominate
successor guardians.
3.
Clarifying the triggering event.
The Standby Guardian Law authorizes two tracks for nominating
a guardian. The most effective route requires parents to file
a standby guardian petition in the Family Court or Surrogate's
Court requesting the judge to approve the parent's selection.
Once approved, the standby guardianship becomes effective on the
parent's death, mental incapacity, or consent (section 1726(3)(d)(ii)).
In the alternative, parents can designate a standby guardian in
a written statement. In this situation, the proposed guardian
must file a standby guardianship petition within 60 days of the
parent's physical debilitation (with the parent's consent) or
mental incapacity (section 1726(4)(b)(i)). It was intended by
the bill's drafters that when a parent dies following the execution
of a designation, the proposed guardian would petition the court
to appoint a regular guardian, rather than a standby guardian.
This lack
of symmetry on the event triggering a standby guardianship has
created confusion among attorneys and judges. To
clarify that courts may approve standby guardianships following
a parent's death or incapacity, whether by petition or designation,
it is recommended that the law be amended to include death as
a triggering event for a standby guardianship based upon an appropriately
executed designation. Similarly, the regular guardianship
law should be modified to authorize courts to approve temporary
guardianships based on the executed designation of a standby guardian.
4.
State Central Registry checks. Prior to the approval
of a guardianship appointment, judges and surrogates must obtain
clearance from the State Central Registry (SCR) office of the
New York State Department of Social Services (DSS) to confirm
that the proposed guardian was not the subject of a verified charge
of child abuse or neglect. Although this background check is meant
to protect children and youth, this exercise frequently takes
up to four months or longer, thereby delaying the appointment
of guardians. Although judges may issue temporary letters of guardianship
to ensure that proposed guardians may consent to their child's
medical care or enroll the child in school, these delays may create
needless uncertainties, and at worst, may jeopardize the safety
of the children. To provide a time frame
for DSS to perform abuse and neglect checks, it is suggested that
the Surrogate's Court Procedure Act (section 1706) and the Social
Services Law be amended to require DSS to complete State Central
Registry checks as expeditiously as possible, but within no more
than 10 working days from the receipt of a judicial inquiry.
Procedural
Guidelines
To facilitate
implementation of the Standby Guardian Law, the following guidelines
are recommended:
1.
Designations versus court petitions. As previously
noted, the Standby Guardian Law permits parents to nominate standby
guardians either by: (1) filing a standby guardianship petition
with the Family Court or Surrogate's Court, pending a hearing
to finalize the appointment; or (2) preparing a statement designating
the standby guardian, subject to a court hearing subsequent to
the triggering event—the parent's physical debilitation or
mental incapacity (death is not a triggering event in designations,
see "Amendments," section 3).
Since the
enactment of the Standby Guardian Law, attorneys have been debating
which of the two options is preferable. The advantage of court
filings has become apparent --following a judicial hearing, parents
can rest assured that their choice of a guardian for their children
will be honored; however, if there is opposition from the children's
other parent, family members, or others, parents can introduce
evidence that supports their choice. This raises the question:
If court filings are clearly the preferred approach, why not amend
the law to discourage designations, perhaps by deleting this option
altogether?
A consensus
among attorneys to retain both procedures has emerged. Although
court filings should be the goal in most situations, some parents,
either because of advancing illness or emotional difficulties,
are unable or unwilling to appear in court to support their selection
of a guardian, yet desire to nominate a standby guardian. With
these parents, preparing a designation at least documents their
wishes; however, the parent will be unavailable to defend her
choice at the hearing initiated by the proposed guardian. To promote
earlier resolution of standby guardianship applications, attorneys
and social workers are advised to encourage parents to file petitions
wherever possible.
In addition,
it has been suggested that preparing designations saves understaffed
legal services attorneys valuable time lost in courtroom waits,
thereby allowing them to serve additional clients. However, scarce
resources should not be used to justify less than optimal representation
of clients.
2.
Case scheduling. Attorneys and social workers report
the difficulties of very ill clients as they wait several hours
for their cases to be heard in Family Court. The Family Court
dockets are filled with difficult and compelling cases, many of
them deserving expedited hearings. However, long waits in court
present significant obstacles to the sickest individuals in their
attempts to resolve legal issues. To prevent lengthy court waits
for individuals who can document severe illness, guidelines should
be developed to allow court administrators to prioritize cases
involving such parties when setting the order for hearing cases.
3.
Surrogate's Court fees. Although
the Standby Guardian Law permits parents to file petitions in
either the Family Court or the Surrogate's Court, some attorneys
avoid the Surrogate's Court because their low-income clients cannot
afford the $15 filing fee. (In contrast, there is no filing fee
in the Family Courts.) The Clerk for the Manhattan Surrogate's
Court reports that judges can waive the filing fee for indigent
clients who so request by affidavit. In November 1993, the New
York State Chief Administrative Judge issued forms for use in
standby guardian cases in the Surrogate's Courts. While these
forms will simplify the filing of cases and promote procedural
uniformity, the Office of Court Administration should additionally
develop a form for requesting a waiver of the filing fee.
4.
The family as client. Surviving children and their
new caregivers need continued legal representation to finalize
custody plans after the ill parent's death. For example, the Standby
Guardian Law requires proposed guardians (in designations) to
file papers with the court following the parent's incapacity.
As community-based AIDS organizations develop legal programs to
serve parents, they should examine their policies on maintaining
surviving family members as clients following the ill parent's
incapacity or death. Although scarce legal resources will be further
strained, in custody planning cases, agencies should generally
construe the newly-constructed family as their client. Where agencies
cannot follow this policy because of staff shortages or conflicts
of interest, they should develop formal linkages with legal services
agencies that can continue representing the family.
Professional
and Community Education
Public and private
resources are necessary to develop training programs on custody
planning targeting attorneys and judges, mental health and social
service providers, and parents with HIV. The concerns of parents
considering custody planning are forcing professionals to assume
new roles and acquire new information, frequently within an interdisciplinary
approach. For example, attorneys need assistance understanding their
client's psychosocial issues; social workers and case managers lack
information on the legal options involved in developing custody
plans; judges may be unaware of the needs of families with HIV/AIDS
and the availability of community resources. Moreover, many professionals
are uninformed about the impact of custody plans on a new caregiver's
eligibility for financial benefits and services.
1.
Legal training. New attorneys are needed to assist
a growing number of parents desiring to discuss options for custody
planning and to develop formal plans. To promote interest in this
area and expand services, efforts are needed to: recruit and offer
financial support to law students interested in assisting parents
with HIV/AIDS; develop AIDS family law clinics at law schools;
increase public and private funding for legal services agencies
and other community-based organizations that desire to develop
legal programs for people with HIV/AIDS; encourage law firms to
develop pro bono programs; and develop professional training programs
at times and locations accessible to the private bar. Education
and training programs should cover the diverse planning options
open to parents, including a comprehensive review of the Standby
Guardian Law. In addition, since all custody plans impact upon
eligibility for, as well as the scope of, public benefits and
services, training programs should integrate the principles of
family and welfare law.
Family Court
judges and surrogates also require comprehensive training on HIV/AIDS
and the epidemic's impact on family law. Unfortunately, due to
the high caseloads of most judges, this type of judicial training
has often been neglected. Court administrators, working with the
bar associations and attorneys specializing in family and AIDS
law, should develop materials and accessible programs on the range
of custody planning options for parents with HIV/AIDS, including
standby guardianships. Programs for judges should also consider
related issues facing the family bench, such as the impact of
AIDS on juvenile justice and ensuring that caregivers have the
authority to consent to their children's medical care.
2.
Social service/mental health training.
Parents with HIV/AIDS rely heavily on clinicians, counselors,
and case managers for professional support, information on benefits
and services, and community referral. To inform parents about
the importance of developing custody plans and to provide an overview
of custodial options, social service and mental health workers
need information on how to introduce and present information on
custody planning. Training should consider: the psychosocial needs
of terminally ill parents as they plan for their children's future,
particularly in the beginning phases of the discussions and as
legal closure or other placement arrangements become imminent;
the difficulties most parents have in disclosing their HIV status
or serious illness to their children; the range of custody planning
options, especially difficult for parents with no obvious new
guardian available; and a general overview of family court procedures.
Finally,
training should examine the complementary professional roles of
social service and mental health workers, and attorneys. Clinicians
and case managers perform the crucial role of initiating and supporting
parents through the planning process; attorneys inform parents
of their legal rights and responsibilities and planning options,
and formalize custody arrangements in the courts. While these
roles may become blurred, especially when legal services are scarce
and parents represent themselves pro se, professionals generally
serve their clients best when acting within their areas of expertise.
3.
Community outreach/consumer training. Community education
is essential to increase awareness among parents on how custody
planning can help them regain control of their children's future.
Understandably, there are many psychological hurdles for parents
to overcome before decisions on custody planning can be made.
To foster thoughtful decision-making on their children's future,
HIV providers, child welfare agencies, legal service organizations,
bar associations, mental health educators, and health practitioners
should develop community-based educational programs on the importance
of custody planning. These efforts should be located in accessible,
non-threatening community sites where parents can feel comfortable.
In addition, easy-to-understand, multi-lingual materials should
be available to introduce the concepts of custody planning, as
well as brief descriptions of custodial options, including the
appointment of standby guardians. To be optimally effective, providers
should augment community outreach efforts with individualized
counseling.
Policy
Analysis
Eligibility
for financial benefits. Appointment
as a standby guardian has important implications for financial planning:
these caregivers, commonly grandparents and maternal aunts, cannot
become eligible for the enhanced subsidies available to foster parents
and some adoptive parents. Low-income guardians can apply only for
Aid to Families with Dependent Children (AFDC or ADC) on behalf
of the children in their care; low-income households may also be
eligible for food stamps. Currently, a New York City guardian may
be eligible for up to $367 per month in public assistance for one
child, plus a supplement of approximately $100 to $110 for each
additional child. In contrast, foster parents and some adoptive
parents (for example, under the Child Welfare Administration's Early
Permanency Planning Program) are eligible for monthly subsidies
of about $455 to $1,346 for each child, with rates set according
to the child's age and health.
As a matter
of equity, federal and state laws governing child welfare programs
should equalize the benefits available to guardians and foster
parents. In Orphans of the HIV Epidemic: Unmet Needs in Six
U.S. Cities, The Orphan Project calls on legislators and policymakers
to enact subsidies for low-income guardians (pp. 41-42). Until
legislation enhancing guardian's financial situation is enacted,
lawyers and social workers must ensure that parents and proposed
caregivers understand the financial implications of custody plans.
Conclusion
Although New
York State's Standby Guardian Law is a relatively modest revision
of family law and court procedures, it significantly enhances the
ability of terminally ill parents to determine who will care for
their children when they are no longer able to do so, and helps
avert costly and disruptive foster care placements. Use of this
law can be promoted by increasing professional and community awareness,
clarifying statutory language, and refining courtroom procedures.
Addressing these concerns can make one of the most difficult challenges
facing parents with HIV/AIDS—planning for their children's
future care—just a little bit easier.
* This group
included Brooklyn Legal Services Corporation B, Gay Men's Health
Crisis, Legal Action Center, Legal Aid Society/Community Law Offices,
Montefiore Medical Center, The Orphan Project, and State University
of New York Health Science Center-Brooklyn.
** Mildred
Pinott of the Legal Aid Society/Community Law Office drafted the
proposed amendments with valuable contributions from Alice Herb,
State University of New York Health Science Center-Brooklyn; Carol
Horwitz, Brooklyn Legal Services Corporation A; Susan Jacobs,
Legal Action Center; Randye Retkin, Gay Men's Health Crisis; Lauren
Shapiro, Brooklyn Legal Services Corporation B; and Gary L. Stein,
The Orphan Project.
More Information
The Orphan
Project
121 Avenue of the Americas, 6th Floor
New York, NY 10013
(212) 925-5290
Fax (212) 925-5675
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