GUARDIANSHIP
Welcome
to The Arc of Oregon Guardianship Web page. Guardianship is an important issue
for individuals with developmental disabilities and their families and
caregivers. We offer the following information as a primer on guardianship and
Arc programs. For more information, contact Elaine Friesen-Strang, The Arc of
Oregon GAPS Director at 503-241-2755 or elaine.strang@arcoregon.org
Determining incapacitation
Determining the need for a guardian
Frequently Asked Questions about
Guardianship
What is guardianship?
Who needs a guardian?
How do I determine if my son or daughter needs a guardian?
What are the types of guardianship?
What is the process for obtaining a guardianship?
Who may be a guardian?
What are a guardian’s responsibilities?
Are there restrictions on guardianship decisions?
What are the standards for a good guardian?
Are there alternatives to guardianship?
Note: Click on underlined words for definitions. Each ORS
statute and OAR rule listed is a link to the actual law. Click on the statute
number or to go to the State of Oregon Web site with more details.
In Oregon, parents are recognized as the natural guardians
of their children, disabled and non-disabled, until the children reach the age
of 18. At that time, parental natural guardianship ceases by law, whether or
not the children have a disability. Any person attaining the age of 18 is
recognized as a competent adult by law, and remains so unless found
incapacitated by a court of law.
Without the court’s determination that an individual is
incapacitated, the individual retains all his constitutional rights and is
responsible for making his own decisions. These rights include the rights to
decide residence, consent to or reject medical care, sign a contract, marry, and
make lifestyle choices.
A person can be found to be incapacitated under Oregon
Revised Statute (ORS) 125.005 if he or she is an adult whose
"...ability to receive and evaluate information effectively or to
communicate decisions is impaired to such an extent that the person presently
lacks the capacity to meet the essential requirements for the person's physical
health or safety. 'Meeting the essential requirements for physical health and
safety' means those actions necessary to provide the health care, food,
shelter, clothing, personal hygiene and other care without which serious
physical injury or illness is likely to occur."
Whether or not an individual needs a guardian depends on
many factors. Perhaps the most significant is the individual's ability to give
informed consent. Informed consent is a person’s agreement to allow something
to happen, based on full disclosure of the facts needed to make the decision
intelligently. Many persons with developmental disabilities are capable of
independently making, or significantly participating in, many decisions that
affect them. The imposition of guardianship can greatly reduce or eliminate
this freedom to participate by transferring decision-making powers to the
guardian.
Even those persons who are apparently unable to make
significant decisions on their own may not require guardianship if they have
trusted support from family, friends or interested others who are willing and
available to counsel them. Unless they are totally incapable of giving input to
decisions that affect them, persons with developmental disabilities are likely
to benefit from assistance and counseling which is less formal than
guardianship. This allows them to retain their essential civil rights while
still benefiting from the guidance of those who care.
It is important to remember that persons with
developmental disabilities are capable of increasing their potential throughout
their lives, particularly if they are allowed to do so in ways which are least
restrictive to their personal liberties. For the vast majority of individuals,
this means living in a supportive community environment where they are able to
learn from a variety of social situations. This learning process may provide a
knowledge base sufficient to decrease the need for guardianship.
Frequently Asked
Questions about Guardianship
A guardian is an individual or organization named by an
order of the court to exercise any or all powers and rights over a person who
has been determined to lack the ability to make and then act upon personal
decisions on their own behalf. The court grants the guardian the authority to
make decisions, which may include:
·
medical treatment
·
residential placement
·
education and vocational needs
·
other issues
Guardianship for an adult can be awarded only
through a court of law. It is a court-approved, legal relationship between a
competent adult called a "fiduciary" or "guardian" and an
incapacitated adult called a "protected person" (formerly called “a
ward”). Guardianship is subject to the supervision of the court.
Under Oregon law, ORS 125.300 (1), guardianship is
to be used for an incapacitated person only "... as is necessary to
promote and protect the well-being of the protected person. A guardianship for
an adult person must be designated to encourage the development of maximum
self-reliance and independence of the protected person and may be ordered only
to the extent necessitated by the person's actual mental and physical
limitations."
Further, ORS 125.300 states, "An adult
protected person for whom a guardian has been appointed is not presumed to be
incompetent. A protected person retains all legal and civil rights provided by
law except those that have been expressly limited by court order or
specifically granted to the guardian by the court. Rights retained by the
person include but are not limited to the right to contact and retain counsel
and to have access to personal records."
Guardianship is a legal way to assist the person
indefinitely or until he or she is no longer incapacitated. It should be
considered only after less restrictive alternatives have been evaluated and
determined not appropriate to meet the person’s needs.
For some people, the following lesser restrictive options
may offer appropriate support:
For other individuals, either a limited or full guardian
may be needed for most decisions. There are some decisions, however, such as
consent to sterilization, which cannot be made by a guardian (ORS
125.320) under any circumstances. (See Restrictions on Guardianships)
There are two major groups of people that may demonstrate
the need for guardianship:
In addition, individuals with mental illness, head
injuries or a significant illness may require guardianship if they are unable
to make and communicate decisions about their personal care.
The fact that a person has a mental disability does not
automatically dictate a need for guardianship. The test for determining the
need for guardianship focuses on the ability of the person to make decisions
and to communicate decisions once made. Making incorrect or ill-advised
decisions on a periodic basis is not the test. Rather, it is an inability to
engage in the decision-making in the first place which is important.
An individual may need guardianship services if he or she
cannot make sound decisions about where to live and work, how and when to seek
medical care or other professional services, how to properly care for
dependents or how to purchase items such as food and clothing.
There may be different reasons why an individual with a
developmental disability may need a guardian. Some common reasons are:
In many cases, there are no easy answers to this question.
In addition to considering your son or daughter’s decision-making competency, a
parent should consider medical needs, residential issues and need for advocacy
assistance. Individuals with similar abilities may require different levels of
intervention and assistance, depending on their family involvement, living
situations and available supports.
Questions for parents to consider to determine
the need for a guardian:
There are three types of guardianship recognized under
Oregon law:
A temporary guardianship is limited to a specific purpose
and for a time period of up to 30 days (with a 30-day extension possible). This
may be used in an emergency medical or dental situation if less restrictive
means are not available.
The notice of a proposed temporary guardianship must be
given or sent to the same list of people and in the same manner as for
non-emergency guardianship proceedings. The notice must be given at least two
days prior to the appointment of a temporary guardian unless the court
finds that there is immediate and serious danger that requires the immediate
appointment of a guardian.
A petition requesting an emergency temporary
guardianship must specify why there is immediate and serious danger to the life
or health of the proposed protected person and that the welfare of the proposed
protected person requires immediate action. The court may waive the usual
required notice before the appointment is made for an emergency guardianship.
The notice is then required within two days after the appointment is
made.
The court will appoint a visitor who will conduct an
interview with the proposed protected person within three days and write a
report within five days after the appointment of a temporary guardian. The
court will hear any objections within two working days after the date the
objections were filed.
The appointed temporary guardian has access to those
records and information that are related specifically to the purpose of the
temporary guardianship. The temporary guardian must report to the court as to
what action(s) he or she has taken when the guardian’s duties are completed,
the temporary appointment expires, or the court orders the termination of the
appointment. A temporary guardian who becomes a permanent guardian (through
additional legal action) may include this information in the first annual
court report.
Filing for a limited guardianship is a legal process for a
guardian to be appointed to act on behalf of a protected person in areas such
as where the person lives (including in or outside of Oregon), medical care and
treatment, or other areas that the court has specified.
It is generally accepted that limited rather than full
guardianship should be used to the maximum extent possible. For example, a
court will limit the guardian’s authority to health care decision-making if a
protected person needs assistance in making health care decisions, but not in
making decisions about where he or she works or engages in leisure activities.
A full guardian has full, decision-making authority. A
guardian can determine, for example, medical care and treatment; and where the
protected person lives and works. Under ORS 125.300 (3), however, a
protected person retains all legal and civil rights not specifically limited by
the court, including the right to contact an attorney, the right to have access
to personal records, and the right to vote. There is no competency
requirement for voting in the State of Oregon.
Additionally, if a protected person resides in a facility
licensed by the State of Oregon (such as a group home serving persons with
disabilities), that individual’s guardian is ensured the rights identified
under Oregon Administrative Rules and ORS 430.210. The guardian, for
example, may become a member of the Individual Service Plan (ISP) team.
The following information describes the process for
limited and full guardianships. Refer to previous information under Types of Guardianship for a brief
summary of the procedures for temporary and emergency guardianships. Costs for
obtaining a guardianship may vary a great deal depending on filing fees, the
court visitor's fee and legal fees. The Arc recommends that a petitioner
consult an attorney who specializes in guardianship.
1. Filing the Petition
A petition to the court must be filed in the county where
the respondent (the proposed protected person) lives. The assistance of an
attorney is most often enlisted in the preparation of a guardianship petition.
The attorney does not need to be located in the respondent’s county. However, it may be more convenient and less
costly if the attorney practices in the county where the proposed protected
person lives.
The petition must specify the request to appoint a
guardian. It must include information such as:
·
name, age, and address of the respondent
·
name, age, and address of the petitioner
·
name of the proposed guardian
·
treating physician’s name(s)
·
care provider(s)
·
factual information that supports the request for the
guardianship
·
any limitations of the guardian's powers
The petition should include a statement as to whether the
proposed guardian has had any past criminal convictions, cancellation of any
occupational licenses, or bankruptcy proceedings. The future guardian must also
indicate whether he or she intends to place the respondent into a mental health
treatment facility, a nursing home, or other residential facility. (After
the guardianship appointment, the guardian must still file a statement
informing the court of any intention to make a placement into one of these
facilities if the need arises at a later date.)
The petition also includes a general description of the
estate of the respondent, sources and amount of income. If the proposed
guardian seeks to exercise any control over the estate of the respondent, there
is additional information that is required. ORS 125.055 details the
information that is to be included in the petition
2. Serving Notice
After the petition is filed with the court, notice must be
delivered to the proposed protected person stating that a petition for the
appointment of a guardian has been filed. The notice must be presented so that
the person receiving it can understand it, printed in 14 point type, and it
must be served at least 15 days before the final date for filing objections to
the petition.
The notice will include the name, address and telephone
number of the petitioner or the person making the motion and their relationship
of the petitioner to the respondent. Additionally, the notice will include a
statement where objections may be made or filed and the deadline for making an
objection. If a hearing has been set, that information will also be included. A
copy of the petition must be enclosed. Additional requirements regarding this
notice can be found in ORS 125.070.
The notice must be sent to others entitled to receive
notice at least 15 days before the final date for filing objections to the
guardianship petition. Others entitled to receive notice include the following:
Objections to the petition may be either written or oral.
(The designated way to present an oral objection will be defined by each local
court.) Anyone not on the original list to receive future notices may inform
the court and the proposed guardian in writing that he or she would like
to receive copies of future filings in this case. The request to the court must
include name, address, phone number and payment of any applicable fees.
3. The Court Visitor
The court will appoint a third party, called a visitor.
The visitor must not have any personal interest in the case, must have training
or expertise to evaluate the abilities and needs of the named person and may
not be the one to serve the guardianship notice to the proposed protected
person.
The visitor will interview the proposed guardian, the
proposed protected person, and any others with relevant information. Within 15
days of the court visitor appointment, a written report is to be submitted to
the court with recommendations regarding the appropriateness of guardianship
and the suitability of the proposed guardian. Additional time may be allowed to
file the visitor's report at the discretion of the court. Anyone (including
persons on the list of those entitled to receive notice) wanting a copy of the
visitor's report must file a specific request for a copy.
The court considers the information contained in the
petition and the visitor's report to determine the following:
·
Whether the proposed protected person is incapacitated in
the areas outlined in the petition
·
Whether the appointment of a guardian is necessary
·
Whether the proposed guardian (identified in the petition)
is qualified and willing to serve
·
Whether any limitations should be placed on the guardian
·
Whether there is a need for further evaluation
Fees for the court visitor vary from county to county. In
Multnomah County there is a set fee, but in many other counties, the visitor’s
fee in determined by an hourly rate.
4. After the Court Visitor
If there are no objections and the court decides that the
respondent needs a guardian and that the proposed guardian is the best one, it
will write the guardianship order appointing the fiduciary or guardian. A
hearing will be held if the court feels it does not have enough information,
the information conflicts, or there are objections filed.
At the time of the hearing, evidence will be presented to
the judge. The proposed protected person can request an attorney from the
court. Both sides can call witnesses and bring evidence. The judge will then
decide if the proposed protected person needs a guardian, who will be the
guardian, and the guardian’s specific responsibilities.
5. After the Appointment of a Guardian
After determining the need for guardianship and the
qualifications of the nominated person, the court will make a guardianship
order that defines the restrictions and powers of the guardianship. A copy of
the order must be attached to the Letter of Guardianship issued by the court. ORS
125.310 specifies the format to be used. The court may require that the
guardian post bond.
Once the judge signs a guardianship order, it remains in
effect indefinitely, or until the protected person or other interested party
successfully petitions to have the guardianship terminated, the judge
terminates the guardianship, or the guardian (with court approval) resigns. The
exception is temporary guardianship, which lasts 30 days with a possible
extension of an additional 30 days.
A judge may remove a guardian without a petition
with the determination that "the best interests of the protected person
would be served by termination of the proceedings." (ORS 125.090 [2][e])
It may be possible that a protected person continues to be incapacitated, that
the current guardian is not serving in the protected person’s best interest,
and that the judge terminates the guardianship.
At any time after the appointment of a guardian, the court
may appoint a visitor. The visitor may perform any duty that he or she would
have performed at the time the guardianship petition was originally filed. This
could include interviewing people, examining records, reporting to the court in
writing, and being present at any hearings.
A guardian may resign at any time with the approval of the
court. If the guardian resigns or is removed, a successor guardian may be
appointed, unless the protected person successfully shows, in the same
proceeding, that he or she is no longer incapacitated.
6. When a Guardian Dies
A guardian may inform the court through his or her Last
Will and Testament (also known as a testamentary nomination) who he or she
wishes to be guardian following the testator’s (guardian’s) death. In Oregon,
the courts give special consideration to the person testamentarily nominated,
although the person ultimately selected must be both willing and capable of
serving and must be found by the court to be fit to serve.
Any person at least 18 years of age, who is able to make
informed decisions, who has not been convicted of a serious crime, and is
acceptable to the court, may be named guardian of an adult with disabilities.
The court may also appoint an agency, public, or private fiduciary.
What are a
guardian’s responsibilities?
If the protected person lives in
a nursing home or residential facility, a notice must also be sent to the Long
Term Care Ombudsman. If the protected person lives in a mental health treatment
facility or a facility for individuals with developmental disabilities, the
notice must be sent to the Oregon Advocacy Center, which is the system in
Oregon that is designated to protect and advocate for the rights of individuals
with developmental disabilities and/or mental illness. For more information
regarding this notice, consult your attorney or the Oregon State Statutes.
The Court has the discretion to grant a guardianship with
restrictions. In that case, the appointed guardian's authority is limited to
the areas that the Court outlines as necessary. Some decisions that the Court may decline to include in the
appointment of a guardian's authority are: living arrangements, consenting to
medical treatment, hospitalization or institutionalization, participation in
lawsuits, property management and real estate transactions, payment or
collection of debts, or creation of a will.
If a surgery is necessary for medical reasons that may
result in sterilization, this procedure must be reviewed by the Oregon Advocacy
Center before consent can be given. In some cases, two medical opinions may be
required.
The Court looks at each
individual's unique situation and tries to impose only those conditions that
are absolutely necessary to maintain that individual's well being. As stated
earlier, a guardian may not authorize sterilization of the protected person.
Some individuals require
assistance with both personal care and estate management. In Oregon, the
primary responsibility of the guardian is to provide consent for issues such as
medical treatment and living situation. A Conservator can be appointed the
responsibility of managing some or all of the property and/or income of the ward.
Guardianship is a long-term
engagement between the Court, the appointed guardian, and the protected person.
The court may modify, revoke, or terminate the guardianship if the protected
person's situation changes, including revocation of the guardianship if the
protected person's ability to make and communicate decisions is demonstrated to
the court.
The guardian is responsible for promoting independence and
assisting the individual to continue to grow toward taking charge of his or her
affairs. Decisions made on the protected person’s behalf should be based on his
or her preferences as much as possible. In addition, the guardian has implicit
responsibility to protect the protected person from exploitation, abuse, and
neglect.
In the early 1990s, the National
Guardianship Association (NGA), a newly formed group of professional guardians,
advocates and others, adopted a code of ethics and standards of practices to
help guide professionals and parents on issues that guardians face, and how to
respond to these issues in the day-to-day role of guardian. These standards
have been continually reviewed and updated, and today comprise 24 different
standards covering areas such as informed consent, confidentiality, conflict of
interest, and self-determination. While many of these standards may be more
germane to professional guardians, family members may want to review these
standards, which may help provide guidance in undertaking the role of guardian.
For a copy of the NGA’s
Standards of Practice from their Web site go to www.guardianship.org
Before pursuing guardianship, family members should first
consider using less intrusive measures. For example, someone who lives alone
and has trouble managing money may not need a legal guardian. The person may
only need a restricted bank account and the occasional visit of a case manager,
family member or other trusted person for help in budgeting money and paying
bills.
Alternatives to guardianship include:
These do not always carry the “legal weight” of
guardianship. Instead, they may only legally protect the person or property to
a limited degree, or are non-legal services or options that may meet the
individual’s needs instead of legal guardianship. It is a good idea to consult
with a knowledgeable attorney experienced in disability issues to make sure
alternate plans do not inadvertently jeopardize government benefits or create
other legal problems.
Some individuals with disabilities receive government,
military and other benefits. They usually receive these benefits by check made
payable to the recipient. Many individuals with developmental disabilities can
manage this money. However, others may not have good money management skills or
are vulnerable to exploitation by others.
The administrator of these benefits, such as the Social
Security Administration (SSA), may sometimes assign a representative payee for
a recipient of these benefits. This payee receives and distributes the benefits
when the individual with mental retardation cannot manage the check. In some cases, family members serve as Representative
Payees. However, in many instances non-governmental organizations (i.e., public
guardian offices, community mental health centers, clubhouses, or even
for-profit companies) serve as Representative Payees. The
payee must regularly account to the benefit’s administration on the use of the
benefit check, and is liable to repay money if it is mismanaged.
The decision to assign a representative payee to someone
is usually based on non-legal documents such as a doctor’s report. Contact your
local SSA office or administration office of other benefits for more
information on the representative payee system. For more information, go to
SSA’s web site www.ssa.gov/payee
Most banks can assist with creating a bank account to help
manage money. For example, benefit checks can be directly deposited and certain
bills automatically paid. It may also be possible for spending money to be sent
regularly to the individual from his or her account. A joint bank account can
help an individual manage money and prevent excessive expenditures.
Setting up a trust may protect money or other property
from being overspent or mismanaged. A carefully written, restricted trust may
provide financial protections that relieve the need for other legal protections
such as guardianship.
A Conservatorship is a formal method of managing and
protecting the income and assets of a minor or a person who is incapable.
Conservatorship is appointed and supervised by the Probate Court.
There are a number of factors that may lead
parents or others interested in the welfare of adults with developmental
disabilities to seek guardianship. Perhaps the most common for parents is the
desire to establish some control over their child's life. They may fear that
their child is incapable of acting responsibly, or they may wish to exert what
they feel is a positive influence over their adult child. Unfortunately, this
is not always a valid or even an effective reason for establishing
guardianship. Although legal authority is established upon the appointment of a
guardian, the legal mechanism in itself cannot prohibit the protected persons
from acting as they please.
Another common reason for establishing
guardianship is to create substitute decision-making authority in case the
protected person is unable to give informed consent. Consent is generally
considered to be valid only if it is given by someone capable of recognizing
the potential ramifications of his or her decision.
This dilemma often arises in medical situations in which
physicians and other health care professionals are placed in the legally
sensitive position of treating a person of questionable capacity and asking for
informed consent. Some physicians, in this situation, will accept consent only
from an adult, legally empowered by appointment as guardian, to provide
substitute consent on behalf of the individual. The appointment of a Health
Care Representative either by the individual or by the ISP team may be desirable
and/or preferable over the expense of obtaining a guardianship. (The laws
governing the appointment and responsibilities of a Health Care Representative
are contained in ORS 127.505-127.660 for a self-appointed Health Care
Representative and OAR 309-041-1500 to 309-041-1610 for an ISP
team appointed Health Care Representative.)
Parents may also seek guardianship in order to
control their offspring’s finances. They may fear the potential of an
unscrupulous person taking advantage of him or her. They may also be concerned
that he or she may make unwise purchases without fully realizing the
consequences. Financial protection alone is generally an insufficient motive
for establishing guardianship due to the protected person's loss of fundamental
rights.
If an individual's assets consist primarily of
payments from Supplemental Security Income, Social Security, or other sources
of governmental support, a representative payeeship might be most appropriate.
This is a mechanism that authorizes one person to receive payments allotted to
another person who is deemed incapable of handling them properly. The Social
Security Administration, Veterans Administration and some private pension plans
have created payee provisions. Under payeeship, a person is not declared by the
court to be incapable of handling his or her property. The person remains
legally capable of controlling all of his or her property and assets, except
those subject to payeeship.
Other parents may petition for guardianship to
gain increased authority to demand better and more appropriate services for
their daughter or son. This may or may not be an effective strategy, depending
on a number of factors outside of the guardianship itself, such as the overall
relationship between parents and service providers. Guardianship does allow
access to a protected person's records, and that fact alone may be a driving
force for parents to seek guardianship.
Note: Names have been changed to protect confidentiality.
Choosing to be a Guardian for Medical
Reasons
Janet and
Cliff always knew they would file for guardianship for their son, Thomas,
because he had on-going medical needs, in addition to his developmental
disability. He had a seizure disorder that required medications and frequent
neurological appointments. He also had scoliosis, allergies, asthma, sinus and
ear infections, and seemed to be more susceptible to colds and viral infections
than their other children. Since he was non-verbal, these illnesses were often
difficult to diagnose and required close monitoring and creative problem
solving. They had a good working relationship with his physician, but since he
saw several specialists, they were concerned that maintaining access to his
records and directing his medical care would be impossible without legal
guardianship.
As Thomas
approached 18 years of age, Janet initiated the process with an attorney. She
was surprised to learn of the fees and court costs, and felt they could not
afford the process at that time. Since Thomas had no immediate medical needs,
and his pediatrician still played a major role in providing his medical care
and making referrals, she and Cliff decided to wait until they saved some money
for this legal process. Three years later, they began the guardianship process
with an attorney recommended to them.
Janet
felt the process went smoothly and since there were no objections, they never
even saw a judge. She said the court visitor was friendly and recognized that
Thomas couldn’t make independent decisions and would always need someone to
advocate on his behalf. As she recalls, the entire legal procedure took about
two months. She said there were several things they did to save time and
attorney expenses. Knowing they would need a statement from their son’s
physician explaining his disability and need for guardianship, she asked
Thomas’s pediatrician to write a letter documenting his needs. She also had a
psychological evaluation from the school and had discussed their decision to
pursue guardianship with his teacher weeks before they contacted the attorney. She
knew they would have the support of all involved.
The one
thing Janet cautions parents however, is that they remember to file the annual
guardianship court reports on a timely basis. “It’s a relatively easy form”,
she explained, “and there have never been any questions concerning it after
filing it with our probate department. But if you’re not careful, you could
overlook the date and forget to send it in. We have made sure October 20 is one
of those dates we never forget—sort of like April 15.”
Choosing to be a Guardian for a
Daughter
Mark has
been a single dad since his daughter was 8. “Sophie and I have always been
close and although I’d like her to be as independent as possible, I’m her dad
and know her better than anyone else. When she needs someone to help her out or
make sure she’s doing ok, I’m going to be that person.” What concerned Mark
most as Sophie entered her teen years, was that people sometimes assumed she
understood more than she actually did. He said it was as if she had all the
right answers, but never really got the questions. “If you stop and ask her
what she means, she gets frustrated, and you realize that she’s putting phrases
together that she’s heard from everyone else.”
As her
peers grew up, Sophie wanted to share their experiences and that caused some
tensions at home. Every parent has protective parenting instincts, and as Mark
says, “when you have a teenage daughter with a disability, you can get anxious
about even daily routines.” Eventually she settled into a job at a sheltered
workshop and their lives took on a predictable, steady pace. That all changed
when Mark began experiencing health problems and realized he couldn’t always be
Sophie’s care provider. He also began accepting the fact that she needed her
own life, separate from him. She eventually moved into a group home, giving her
24-hour support, but also a sense of being on her own.
Soon
after Sophie moved, Mark decided to contact an attorney about guardianship. He
wanted to make sure that even though his daughter lived half way across town,
and spent most of her week with other people, he would still be included on her
team and would be responsible for major decisions. As he put it, “I didn’t want
to take anything away from her, but I knew she couldn’t even tell a doctor what
her symptoms were if she got sick. And I knew she would go along with just
about anything people wanted.”
Initially
there were a few staff members that questioned why Mark would pursue
guardianship. They saw it as a threat to Sophie’s self determination. But most
of the team members acknowledged that Sophie really couldn’t make independent
decisions; she was easily influenced by others, and was not able to form
opinions without people offering their own first. They also knew that Mark
tried to balance what was in his daughter’s best interest, with what he thought
she would want for herself. Sophie didn’t fully understand the implications of
having a guardian and didn’t object to her father’s new role. She simply saw
him as her father, someone she trusted and looked forward to seeing every
weekend.
Choosing
Not to be a Guardian
James is an adult with Down Syndrome. He lives in his own suite on the third floor of his family home. He takes public transportation daily to his job in the hospital cafeteria wh