Running head: Delays in Receiving Health Care

Delays in Receiving Appropriate Primary and Preventative Health Care in Adults with
Disabilities
Lycia L. Harris
Jacksonville State University

Delays in Receiving Health Care

Adults with disability face many challenges in their daily lives. One of the challenges,
delays in receiving appropriate health care, is an important issue for this population. Primary
care is important to ensure that members of the community have adequate access to the health
care delivery system. Preventative care is important because it is preventative. Early diagnosis
and identification of risk factors for chronic disease are important to improve health outcome and
reduce the burden of health care funding on community as a whole.
Many adults with disability do not receive appropriate primary and preventative care in
comparison to adults who do not have disability. Factors in the delay of health care received by
the disabled include: physical, mental, social, economic, and transportation. This paper discusses
the adults with disability population, problems with access to care, roles the Advanced Public
Health Nurse(APHN) and interventions the APHN can engage in to connect this population with
needed primary and preventive services.
Description of Population
The population of focus is adults with disability. Usually, someone is considered
disabled based on medical models that equate disability with an impairment of one or more body
functions or structures that interfere with daily activities (Sharby, 2015). In 1990, the Americans
with Disabilities Act (ADA) defined disability as a person who is either physically or mentally
impaired to a point that limits the performance of at least one daily activity. Census data from
2012 said 56.7 million people have a disability and of those, 38.6 million people have a severe
disability (Sharby, 2015). People with disability are usually poor and have a low education level
(Sharby, 2015).

Delays in Receiving Health Care

People with disabilities are a vulnerable population and often receive inadequate and
unequal healthcare compared to those who do not have disability. Vulnerable populations are
populations at risk and are deemed vulnerable based on race, socio-economic status, age and
health status and need. Health care professionals generally use two models for deciding
disability: medical model and social model. The medical model says that disability is an
individuals physical or mental disability along the social problems it causes. The social model
says the disability an individual has is based on their interaction with their environment including
the attitudes of people who do not have disabilities and perceived stereotypes.
People with certain disabilities are automatically left out of certain life experiences
because their disabilities will not allow them to participate. Impairment or disability, is seen as a
negative health outcome and health professionals have traditionally perceived their task as
preventing, treating, or curing such outcomes (Sharby, 2015). It is important for community
health nurses to include those with disabilities when mapping out health promotional activities.
Access to Health Care
Adequate access to healthcare for the disabled is a very important issue facing our
country. Research has shown there is a great disparity between the types of health care
Americans with disabilities experience verses Americans who do not have disabilities. Some of
the reasons people with disabilities experience problems gaining access to health care are: the
way disabled patients are treated by their providers, physical limitations, public barriers,
improper communication, income, ethnicity, and type of insurance or lack of insurance.
Disparities are suffered at all levels of health care. Those with disability usually put the most
financial strain on health care delivery systems.

Delays in Receiving Health Care

In most instances, the amount of additional time, therapies and intervention required for
adequate treatment of people with disabilities are not successfully negotiated with health care
plans and regulatory policies to provide adequate funding for disability needs (Sharby, 2015).
Careful monitoring of at risk groups and proper reporting of data to focus groups and
governmental agencies should be done to aid identification. Public health nurses must focus care
on prevention, education and communication so those at risk do not get lost in the system.
The American government was based on the premise that every citizen is entitled to the
protection that is brought about under basic human rights (Stanhope, 2012). People with
disabilities, however, were in the last group of people in the United States to receive human
rights protection (Stanhope, 2012). The disabled often face discrimination that leads to feelings
that they are not actually a part of American society (Stanhope, 2012).
The Americans with Disabilities Act of 1990 was the first comprehensive civil rights
legislation for persons with disabilities (Stanhope, 2012). One of the most important impacts of
the passing of this bill was the emphasis that was placed on community care for the disabled
instead of institutionalizing them and the growing emphasis on providing care in as much of a
home-like environment as possible (Stanhope, 2014). One of the biggest issues those with
disability face is access to appropriate and equal primary and preventative healthcare (Stanhope,
2014). Sometimes access is difficulty because of lack of communication. Sometimes lack of
access is due to problems with transportation.
Adults with disabilities are four times more likely to report their health to be fair or poor
than people with no disabilities (Krahn, 2015). Healthy People 2020 is a governmental initiative
designed to improve the health of the American people. The vision, mission, and overarching
goals provide structure and guidance for achieving the Healthy People 2020 objectives

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(healthypeople,2016). While general in nature, they offer specific, important areas of emphasis
where action must be taken if the United States is to achieve better health for all people by the
year 2020 (healthypeople,2016). Developed under the leadership of the Federal Interagency
Workgroup (FIW), the Healthy People 2020 framework is the product of an exhaustive
collaborative process among the U.S. Department of Health and Human Services (HHS) and
other federal agencies, public stakeholders, and the advisory committee.
Healthy People 2020 identified and outlined topics of importance related to disabled
Americans (healthypeople,2016). Objective DH-4: Reduce the proportions of people with
disabilities who report delays in receiving primary and periodic preventative care due to specific
barriers, addresses the differences and difficulties those with disabilities face in obtaining
healthcare related to those who do not have disabilities (heathypeople,2016). Disability is
usually attributed to, but does not always mean, poor health status. Building on newer models of
disability, examination of health disparities affecting people with disabilities is an emerging area
of focus in which researchers have only recently begun to document: (1) differences in health
status that cannot be solely attributed to the presence of disability and (2) the provision of
disparate health care that is solely attributed to the presence of disability (Goode, 2014).
Five Sub-roles of the Advanced Public Health Nurse
The job of the Advanced Public Health Nurse (APHN) is multi-faceted. The
APHN must wear many hats to be an effective part of the community he or she serves. The five
roles are: clinician, educator, administrator, consultant, and researcher. The clinician role is the
one where the biggest differences in practice between the APHN and the Nurse Practitioner (NP)
can be observed. The APHN serving in this role must conduct community assessments; identify
needs of at risk populations; and plan, implement and evaluate population focused programs to

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achieve health goals, including health promotion, and disease prevention activities (Stanhope,
2014).
As an educator, the APHN acts indirectly in the populations care. This role included
health education within a nursing framework and professional nurse educator roles, such as
faculty positions (Stanhope, 2014). At risk groups are identified in the community and once
identified, the APHN implements and teaches health promotion activities (Stanhope, 2014). This
role is important because the APHN teaches the served community to be responsible for their
health and important information to maintain health through anticipatory guidance. APHNs who
are administrators usually work in management in health facilities or health agencies.
The APHN serving in this role works in a business capacity and is usually involved with
budgeting; establishing quality control mechanisms; and program planning and influencing
policies, public relations, and marketing (Stanhope, 2014). The APHN who is a consultant is
involved with individual, family or community problem solving to improve how health care is
delivered. The APHN may even provide their consultation services to other nurses, doctors, or
schools to help them improve current treatment strategies. As a researcher, the APHN should be
committed and dedicated to the improvement of nursing practice (Stanhope, 2014). Researchable
community problems are identified, and once adequate, evidenced-based research is done, that
new knowledge is applied to the target population to promote health.
The acts of identifying, defining, and investigating clinical nursing problems and
reporting findings encourages peer relationships with other professions and contributes to health
care policy and decision making (Stanhope, 2014).
Intervention Strategies for the APHN Working with Patients with Disabilities

Delays in Receiving Health Care

People with disabilities consistently report higher rates of obesity, lack of physical
activity, and smoking (Krahn, 2015). Adults with disability are not likely to get preventative care
and experience certain diseases, such as diabetes and heart disease, along with the co-morbidity
of the disease. It is important for the APHN who works with the disabled to assess community
needs and initiate and implement education and monitoring programs that benefit the population.
As a clinician, the APHN should do assessments of the needs of the community to help
figure out how to serve it appropriately. The Centers for Disease Control (CDC) maintains the
Disability and Health Data System (DHDS). The APHN working in the community may use this
information to get information about people with disability at a state level. In 2014, 37.7 % of
Alabamians had disability. Other Alabama disability statistics for 2014:

16.2% of adults had a cognitive disability (serious difficulty concentrating, remembering, or

making decisions) compared with 10.8% in the U.S.
18.8% of adults had a mobility disability (serious difficulty walking or climbing stairs)
compared with 13.1% in the U.S.
6.2% of adults had a vision disability (serious difficulty seeing, even when wearing glasses)
compared with 4.7% in the U.S.
5.1% of adults had a self-care disability (any difficulty dressing or bathing) compared with 3.6%
in the U.S.
10.1% of adults had an independent living disability (any difficulty doing errands alone such as
visiting a doctors office or shopping) compared with6.6% in the U.S.
(CDC.gov)

Based on the above information, the APHN working in communities in Alabama can
plan, implement, and evaluate programs to benefit the 37.7% of people in Alabama living with
disabilities. An example of such a program is making sure that clients get yearly physical exams
and vision screenings. As an educator, the APHN working in Alabama communities can
implement programs to educate patients and caregivers of people with disabilities. The APHN,
depending on the type of program involved, can go community centers, churches, or, assistive
programs to teach skills such as self-care, access to transportations, assistive community

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services, and ways to get access to those community services. The APHN can also put those who
care for people with disabilities in touch with support groups, adult daycares and respite services.
As an administrator/manager, the APHN can manage community centers or facility based
programs and initiatives such as clinics and special programs that can benefit people with
disabilities. The APH can also be helpful in developing, planning, and managing programs that
help those with disability have equal access to health care, such as in home nursing check-ups.
The APHN as a consultant and researcher can evaluate currently implemented community
programs and services. The most important aspect of the APHN as the consultant and the
researcher is looking at what programs and services work for people with disabilities verses
programs and services that do not work. Researchers can look at relevant data, not only in their
state but nationwide, to evaluate evidenced-based information.
The creation of new data could directly contribute to the development of new programs
and protocols of treatment. The APHN consultant helps improve current programs and
disseminate evidenced-based data to health facilities and health companies.
Conclusion/Summary
Reasons for delays in receiving appropriate primary and preventative care in disabled
adults is a very important issue facing our country. Research has shown there is a great disparity
between the types of health care Americans with disabilities experience verses those Americans
who do not have disabilities. Some of the reasons include, physical, mental, economic and
geographic barriers. Surprisingly, social barriers are also a huge factor. The attitudes and
treatment of people with disability by their caregivers sometimes is a hindrance, because the
attitudes are fueled by stereotypes. Careful monitoring of at risk groups and proper reporting of

Delays in Receiving Health Care

data to focus groups and governmental agencies should be done to aid in identification of
discrepancies and disparities in care.
Public health nurses must focus care on prevention, education, and communication so
those at risk have proper access and treatment. This is not always easy, due to lack of available
public health resources and changes to healthcare policy. In order for the APHN to be effective,
he or she must stay abreast of information on the state and national levels, community resources,
and healthcare laws. The APHN must also intervene when necessary. This type of
community/population based behavior falls directly in line with the objective DH-4 of
Healthypeople 2020 which states: Reduce the proportions of people with disabilities who report
delays in receiving primary and periodic preventative care due to specific barriers, addresses the
differences and difficulties those with disabilities face in obtaining healthcare related to those
who do not have disabilities (heathypeople, 2016). The APHN who works with adults with
disabilities must be the advocate and voice of this underserved community.

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