FIG1For older parents whose
adult children have serious mental illness, the future is riddled with
uncertainty, and a single question is enough to provoke many sleepless nights:
What will happen to my child when I can no longer care for him or her?
Agnes Hatfield, Ph.D.: "The biggest obstacle to developing a plan
for the relative's future is procrastination."
Although some anxiety can be allayed by planning for the child's future,
many parents in this position are overwhelmed at the thought of creating such
a plan—they may be struggling with their own health problems and
preoccupied with their child's mental illness at the same time.
Parents must also face difficult barriers before they can begin planning
for their child's future, according to Agnes Hatfield, Ph.D., director of the
National Alliance for the Mentally Ill (NAMI)-Maryland Older Caregiver's
Project and mother of an adult son with mental illness. (The advice in this
article also applies to other caregivers of relatives with mental illness,
such as siblings.)
Hatfield is a longtime NAMI member whose concerns for her own son's future
spurred her to action six years ago.
It was then that she created a four-hour workshop to help caregivers"
make the relative's period of transition away from dependence on
parents to dependence on themselves and others in the community as smooth as
possible," she said.
There are many cases, Hatfield noted, in which a parent has been providing
for an adult child with mental illness yet has made no plans for his or her
future, including preparing that child emotionally for a time when the parent
will no longer be around.
When the parent becomes critically ill or dies, the child may experience a
mental health crisis so serious that he or she needs to be hospitalized, she
In the workshops, Hatfield addresses issues such as the need to prepare the
son or daughter for the loss of the parent, the role of siblings, the
selection of an advocate for the relative, and creating a trust or will for
the child with mental illness.
Hatfield leads the workshops with an attorney. The Maryland Mental Hygiene
Administration funds the workshops, which are held in more than five counties
around the state several weekends a year.
In her experience leading the workshops, Hatfield has noted that "the
biggest obstacle to developing a plan for the relative's future is
That procrastination may result in part from unresolved feelings parents
may have toward their child's mental illness, making it especially difficult
for the parent to start planning for the adult child's future.
"Parents may feel overwhelmed when they think about a loved one
coping in the world without their love and support," Hat-field said.
She said she can empathize with many of the parents who attend her
workshops. "They speak about great anxiety or pain because they
acknowledge that their hopes for their child's complete recovery have
She noted that some families insist they are not able to develop a plan for
their relative because they have very little money to leave him or her.
However, "it becomes even more important to plan when resources are
limited so that what is available can be used as wisely as possible,"
Hatfield pointed out.
To create a plan for the son or daughter, parents must first assess their
child's needs and note how each of those needs are currently being met."
Caregivers need to take special note of all the things they do for
their relative during the course of a week or month," Hatfield said,
because someone else will need to do those things in the future, "even
if that someone else is the disabled family member himself or herself,"
Caregivers must then identify resources for meeting the needs of a disabled
relative. Most of the services will probably be found in the public mental
health system, she said.
Hatfield pointed out that it is wise for the person with mental illness"
to make the transition away from dependence on the family to care in
the public system while parents are alive and able to support the person
during the transition process."
Families should also be acquainted with services provided by their local
social services departments, such as food stamps and medical assistance.
In addition, some religious institutions and civic organizations have
programs for people with disabilities, Hatfield noted.
Another option for families who can afford it are private-pay services such
as PLAN of Mary-land-DC, a nonprofit organization staffed with social workers
who take over many of the roles families once assumed.
Once a parent or caregiver has outlined a plan for their relative's future,
he or she must select an advocate who will ensure that the plan is carried
out, Hat-field said.
Their job is to "oversee services in the community and to go to bat
for the person when there are difficulties," she noted.
Whenever possible, it's a good idea to identify more than one person to
serve as an advocate so that they can share the job. "One person may
have a better understanding of mental illness, another may be more competent
with money, and another may be closer to the person who needs help,"
Part of the workshop addresses the role siblings play in the life of a
brother or sister with mental illness. "How siblings feel about caring
for a family member and what roles they are willing to assume will vary
considerably from family to family," she said.
Variables such as the relationships between siblings or the culture in
which the siblings grew up can influence their sense of obligation to family
One of the most important things that family caregivers can do for their
relative with mental illness is to arrange a trust or will on behalf of that
Nonetheless, parents ought to be aware that "leaving money directly
to disabled children who are receiving `needs-based' government benefits such
as Supplementary Security Income could result in a loss of those
benefits," Hatfield said.
However, some forms of government benefits such as Social Security
Disability Income and Medicare are not needs based and thus not affected if a
person receives income directly by inheritance.
"Families should consider indirect ways of providing for the
relative's financial needs," Hatfield suggested.
One way to do this is to disinherit the child with mental illness and leave
assets to a sibling with the expectation that the sibling will provide for the
relative, which may be a risky approach, she acknowledged.
Another option is to set up a trust, which is a legal arrangement under
which property is owned and managed by one person for the benefit of another.
The trust may provide for dental care, recreation, travel, and transportation,
"Attorneys usually advise the use of discretionary trusts,"
Hatfield said, "to benefit the disabled relative without causing the
person to lose certain types of government benefits."
These trusts stipulate that benefits may be used only to supplement
government aid and cannot be used to replace government entitlements, she
Once a trust is established, it is important for parents to communicate
their future plans openly to the rest of the family. "It is better if
caregivers can deal with potential conflicts when alive rather than have the
conflict arise when the will is read," she said. ▪