The following column features expert responses to commonly
asked questions about HD care and treatment.
How can an HDSA Social worker help my family deal with Juvenile HD?
Kathy Knoblauch, MSW, is a social worker for the Massachusetts Chapter.
During the course of Juvenile HD, families are under incredible stress.
For parents, maintaining employment may become challenging, caregiving
may create feelings of isolation or helplessness, and feelings of guilt or
rage may become overwhelming.
For the siblings of the child with HD, fear of the disease or the sibling may
set in, attention-seeking problem behaviors may arise, and survivors guilt
may lead to emotional problems. Under no circumstance should a family
try to carry these burdens alone.
HDSA social workers can offer help to the whole family as they try to sort
out the complex emotions and challenges that they face. Social workers
roles vary, but in general, we provide emotional support as well as case
management services. Often, we are qualified to provide individual and/or
family counseling that may be very helpful in dealing with the difficult
dynamics that arise due to the stress of having HD in the family.
Social workers are very knowledgeable about community resources, including
home care, respite care, housing options, transportation, and legal and
financial assistance. We are familiar with the eligibility criteria, and can help
families get through the maze of services and red tape. We know how the
system works, and serve as advocates for the family.
Resources for Children
There are many resources available for children struggling with HD. People
with juvenile HD often qualify for resources under Developmental Disabilities
programs. It is a good idea to explore this resource as soon as possible,
because there may be a whole array of well-funded services, including respite
care, available. In many cases, the services extend into adulthood if the
person is eligible.
Some of the most helpful resources for children or teens in the early stages of
HD are found in the school system. Through the school system, your child may
have access to classes to assist with diminishing cognitive abilities.
Physical and occupational therapy is also available to help students develop
to the fullest extent possible.
It is important for parents to familiarize themselves with community resources
that may be helpful as their childs HD progresses. These resources may include
home health care (through a visiting nurse association or a private home care
organization), respite care (in-home or out-of-home), and care in a long-term
care facility (such as a nursing home or chronic care hospital). Contact a social
worker for more information about resources in your area.
Because the financial burden of care can be quite overwhelming, it is very
important to plan ahead to finance care in the later stages. This may include
applying for Medicaid, as well as exploring other health and life insurance options.
It may be helpful to consult with a social worker and/or lawyer familiar with
financial planning for people with illness or disability.