(Lesson 4- Table of Contents)
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It is no surprise that family finances and insurance status play
an important role in predicting who will seek out health care
services. There are also organizational barriers some families
must overcome to obtain adequate health care. These barriers include
lack of transportation and child care, inconvenient hours, long
waits and lack of information about where to go for services.
The distance a family must travel to receive services can be a
problem, especially in rural communities. The reluctance of some
health care providers to accept Medicaid, and the difficulty some
people have enrolling in assistance programs have also been cited
as reasons why people fail to obtain adequate care or follow through
with referrals.
There may also be cultural barriers or community rules that prevent
families from accessing services. Within some cultures, the birth
of a special needs child may be seen as a punishment for some
family indiscretion and a genetic explanation for a child's problems
may not be sought out as it can only confirm the family's fault.
Some religious communities have specific beliefs about the use
of health services. Other communities have unspoken rules that
make it difficult for families to access services. These unspoken
rules may govern the choice of health care providers or the type
of services that are used. Professionals who provide services
(e.g., family planning or prenatal diagnostic services) that are
not acceptable to the community may not survive long in such an
environment.
When assessing the needs of families it is important to know their
cultural beliefs and recognize their community rules. It is also
helpful to keep in mind Maslow's hierarchy of needs. At the top
of the list is the basic physiological needs such as food and
shelter. He contends that until these needs are met, at least
partially, a person will not be concerned with the needs at the
next level such as security, order, protection or family stability.
Families that are struggling to meet their basic needs are also
unlikely to seek out or obtain adequate health care.
MASLOW'S HIERARCHY OF NEEDS
In addition to food and shelter, some families need mental health
or counseling services to create family stability and provide
a safe environment for family members before health care issues
can be addressed. If these basic needs are met and the family
perceives a professional as being helpful, this may result in
future opportunities to work with the family to promote adequate
health care.
While most health care providers are familiar with the federally
funded programs designed to meet a family's most basic needs,
it may take some ingenuity to identify resources that will provide
a patient or a family with a sense of belonging or group affiliation.
To meet these needs it may be necessary to put families in touch
with disease specific support groups or community programs that
provide respite care, inclusive recreation activities, parent
support, religious support, etc.
Information about national genetic support groups can be obtained
from the Alliance of Genetic Support Groups by calling 1-800-336-GENE.
To learn about the services available in your area call the Department
of Social Services, the Department of Health, the schools, legal
services, pastoral groups, the March of Dimes, United Way, Easter
Seals, etc.
As you work to identify services, collect information about each
program in a systematic fashion. Determine what types of services
are offered by the program, the cost of the services, the eligibility
criteria, where and how often the services are provided, who provides
the services, the referral process, and the "real barriers,"
such as distance and cost, that might prevent a person or family
from accessing these services.
Some communities have resource directories listing local service
providers. If your community has such a directory, familiarize
yourself with the available programs and identify a contact person
within each agency. It is also helpful to visit with people who
have used the service and assess their level of satisfaction.
This information can be invaluable when making a referral.
(Lesson 4- Table of Contents)
(Next) (Glossary)