4 Health and Personal Care Services for the Disability Community
Esther Son, MSW, MA, PhD
This chapter will discuss the ways in which people with disabilities in the United States face barriers in access to care as a result of the quality of their insurance coverage, whether public or private. It will also discuss the need for accessible equipment in a range of medical settings, and how this lack of equipment is a barrier to prevention services. A discussion of the challenges in obtaining sexual health education, fertility consultations, and parenting guidance will also be discussed with attention to the biases that some in the medical community have about people with disabilities. This will be followed by a presentation of views from the disability community on the negative effects of prenatal genetic testing and gene editing approaches (such as CRISPR) on future generations of people with disabilities, and the ways in which narratives about these services reverberate back to the days of eugenics. The chapter will conclude with a discussion of how personal care services are a key aspect of community inclusion for the disability community. It will review key health-related laws, policies, and programs relevant to people with disabilities in the United States, such as the Medicaid and Medicare programs. This chapter will also include a case study with discussion questions.
People with disabilities have been an unrecognized “health disparity population” due to the health conditions directly linked to their disabilities. While some health conditions associated with disability result in poor health and extensive healthcare needs, others do not (Krahn et al., 2015). National Institutes of Health (NIH) defines “health disparity populations” as “racial and ethnic minority populations, less privileged socioeconomic status (SES) populations, underserved rural populations, sexual and gender minorities (SGM), and any subpopulations that can be characterized by two or more of these descriptions” (National Institute on Minority Health and Health Disparities (NIMHD), n.d). People with disabilities are disproportionately poor, rural, and members of racial and ethnic minority groups, and thus face amplified disparities on multiple fronts and have the exact general healthcare needs, such as preventive and specialty care services, as people without disabilities (Pollack et al., 2021). However, they have less access to healthcare services due to barriers in accessing healthcare, and therefore experience unmet healthcare needs. Article 25 of the United Nations (UN) Convention on the Rights of Persons with Disabilities (CRPD) also warrants the right of persons with disabilities to attain the highest standard of healthcare, without discrimination (United Nations, 2007). However, there are still crucial issues and debates regarding the U.S. ratification of the CRPD. For example, some opponents worry that the term “sexual and reproductive health” in CRPD could be a euphemism for abortion. Supporters note that the word “abortion” is never mentioned in the Convention and claim that no U.S. laws related to abortion would be created due to U.S. ratification (Blanchfield & Brown, 2015).
Over one billion people are estimated to live with some form of disability, corresponding to about 15% of the world’s population (WHO, 2020). In particular, people with significant disabilities, often requiring intensive healthcare services, account for more than 12% of the US population (Krahn et al., 2015). As a group, people with disabilities are more likely to report their physical health and mental health to be fair or poor, and to have higher rates of smoking, physical inactivity, obesity, and alcohol use, and experience more barriers in accessing healthcare services than people without disabilities (Singh & Lin, 2013). Furthermore, they are more likely to experience chronic diseases and conditions at earlier ages than their counterparts, and, as a consequence, this group needs to be included in health promotion campaigns (Krahn et al., 2015).
The recent report “Healthy People 2020: An End of Decade Snapshot,” provides a summary of progress made over a decade in meeting the Healthy People 2020 objective targets, showing that rates improved, and either met or exceeded the targets (Office of the Assistant Secretary for Health, 2020). The data show a success rate of 47.2% (n = 76 of 161) of trackable objectives with data for persons without disabilities or activity limitations, and a success rate of 32.5% (n = 50 of 154) of trackable objectives with data for persons with disabilities or activity limitations (Office of the Assistant Secretary for Health, 2020). In addition, baseline data of the national health initiative Healthy People 2030 revealed that 37.2 % of adults with disabilities, age 18 years and older, experienced delays in receiving primary and periodic preventive care due to cost issues in 2018 (U.S. Department of Health and Human Services, 2021). These delays can lead to many health problems, including preventable diseases. Specifically, during the COVID-19 pandemic, this vulnerable population has been excluded consistently in response measures to control the pandemic. As such, this has resulted in people with disabilities being at increased risk with devastating consequences, including the risk of contracting COVID-19, developing severe symptoms from the disease, or dying from it. It also leads them to have poor health during and after the pandemic, whether or not they have been infected with COVID-19 (WHO, 2020).
Social determinants of health are the conditions in which people are born, grow, live, work, and age, and shape an individual’s health (Healthy People, 2020). They include factors like socioeconomic status, education, neighborhood and physical environment, employment, and social support networks, as well as access to healthcare, including health coverage, provider availability, provider linguistic and cultural competency, and quality of care (Artiga & Hinton, 2018). Addressing social determinants of health is fundamental for improving health outcomes and reducing disparities in health and healthcare. To address social determinants of health, there are an increasing number of initiatives within and outside of the healthcare system. For example, there are recent initiatives that address non-medical, social determinants of health within the context of the healthcare delivery system, such as housing and employment support to Medicaid enrollees, including people with disabilities through a range of optional state plan and waiver authorities (Artiga & Hinton, 2018).
Racial and Ethnic Disparities in Healthcare Access, Use, and Quality of Care for Children with Disabilities
Health disparities refer to “differences in health outcomes at the population level” and “that these differences are linked to a history of social, economic, or environmental disadvantages. Also, these differences are regarded as avoidable and unjust”, which is defined as health inequities by the World Health Organization (WHO) (Krahn et al., 2015, p. 198). There are significant racial and ethnic disparities in healthcare access, use, and quality for children with special healthcare needs (CSHCN), who have high rates of comorbid health conditions and who subsequently require more frequent and more intensive health services than their typically developing peers (Magaña et al., 2012; Parish et al., 2013c; Son et al., 2017). For example, there are racial and ethnic disparities in age at diagnosis of developmental disabilities, including autism, for Black and Latino children, who receive a diagnosis later than their White counterparts (Dababnah et al., 2018; Mandell et al., 2009). These children are also more likely than White CSHCNs to have unmet health-care needs, including specialty, dental, and mental healthcare (Ngui & Flores, 2007), in addition to encountering delays in accessing needed healthcare (Rosen-Reynoso et al., 2016). Furthermore, low-income parents of CSHCNs, and those who live in states with higher levels of economic inequality, face higher financial costs (Parish et al., 2012).
“Quality of healthcare” focusing on family-centered care can be measured by six outcomes on family perceptions of and satisfaction with their interaction with the provider, including having a personal doctor who listens, spends sufficient time, provides information, treats families as partners, and respects family cultural norms and values (Montes & Halterman, 2011). Studies show significant racial and ethnic disparities on 5 of 6 quality of healthcare outcomes between Black and White children and Latino and non-Latino White children with autism and other developmental disabilities (Magaña et al., 2012; Parish et al., 2013c). Racial disparities in quality of healthcare were also substantial between Asian and White CSHCNs. Asian parents were significantly less likely than White parents to report that their healthcare provider provided the specific information they needed, helped them feel like a partner in their child’s care, and was sensitive to the family’s values and customs (Son et al., 2017). In particular, these disparities in quality of healthcare are closely related to cultural and language barriers faced by children with disabilities, whose parents migrated to the United States and have limited proficiency in English (Eneriz-Wiemer et al., 2014; Son et al., 2018).
Women with Disabilities as a Health Disparity Population
Women with disabilities experience significant disparities in their healthcare utilization, health behaviors, and health status (Mitra et al., 2015a). They are less likely to receive routine preventive healthcare, such as cervical cancer screening, mammography, and dental care, compared to women without disabilities (Brown et al., 2016; Havercamp et al., 2015; Parish et al., 2013a, 2013b; Swaine et al., 2014; Wisdom et al., 2010). There are also disparities in access to reproductive health services, including family planning and contraception, screening for sexually transmitted infections, maternal health services, and fertility services for women with disabilities, including intellectual and developmental disabilities, mental illness, and physical disabilities (Silvers et al., 2016). While women with and without disabilities are equally likely to desire pregnancy, studies show that pregnant women with physical disabilities are less likely to receive adequate prenatal care, experience barriers to accessing healthcare compared to women without disabilities, and face criticism and judgment from those who disapprove of their pregnancy, including their families and healthcare providers (Iezzoni et al., 2015; Lagu et al., 2017; Mitra et al., 2017). Furthermore, pregnant women with disabilities are at elevated risk for stillbirth, preterm birth, low birth weight babies, fetal growth restriction, and cesarean delivery, although risks vary by type of disability (Mitra et al., 2015a; Parish et al., 2015).
It is estimated that 17.8% of women in their childbearing years, ages 15-44, reported that they have a disability (Mosher et al., 2017). A study on pregnancy among women with physical disabilities using a nationally representative dataset suggests that, after adjusting for age, women with chronic physical disabilities (CPD) are as equally likely as their nondisabled peers to be currently pregnant (lezzoni et al., 2014). Iezzoni and colleagues reported in 2014 that women currently pregnant being in fair or poor general health roughly nine times more often than nondisabled pregnant women. In addition, almost half of pregnant women with CPD reported two or more health conditions (lezzoni et al., 2014). Another study, using a U.S.-population-based sample of women with intellectual and developmental disabilities, reported that the rates of adverse pregnancy outcomes were elevated for women with disabilities, including early labor, preterm birth, and preeclampsia, and that their infants were more likely to have low birth weight compared to women without disabilities, even after adjusting for age, race, ethnicity, and insurance type (Parish et al., 2015).
Previous intersectional analyses have been done about women’s health in the disability community, specifically looking at the social identities of race and ethnicity (Ben-Moshe & Magaña, 2014). For example, Bost (2010) challenges the binary of color in racial analyses of disability through reanalyzing Chicana writers’ literary accounts of chronic illness, pain, and disability. Those writers wrote about disability experiences as part of their daily lives. Ben-Moshe and Magaña (2014) discussed the irony that those women might not identify them as disability studies scholars. Instead, they describe their experiences as an example of how disability identity is experienced differently by persons with disabilities who are not white and middle class. In addition, gender identity among people with disabilities has not been explored significantly beyond binary categories of gender (i.e., Transgender, Non-Binary, and Gender Non-Conforming Identities) despite multiple compounding and marginalizing forces, including discrimination in healthcare and resulting health disparities faced by non-binary individuals with disabilities. There is a lack of focus in the current literature on gender identity among people with disabilities and unmet healthcare needs (Mulcahy et al., 2022).
Medicare and Medicaid were passed to serve as safety nets for the most vulnerable populations in the United States during the last 55 years. Both programs cover about 111 million people, or 1 in 3 Americans, including 10 million dual-eligible people. That number is projected to reach 139 million people by 2025 (Altman & Frist, 2015). Medicare was established in 1965 as a national social insurance program administered by the federal government to insure Americans reaching retirement age. People pay into the program over the course of their lives and, once eligible, are entitled to coverage without regard to income or health status. Since 1973, it has also covered people under age 65 who receive Social Security Disability Insurance (SSDI) benefits. Medicare requires nonelderly individuals with disabilities receive SSDI benefits for at least 24 months. They must be unable to engage in gainful activity for at least 12 months to qualify for SSDI. People are required to wait five months before receiving disability benefits, so that SSDI recipients must wait a total of 29 months before their Medicare coverage begins. People under age 65 who are diagnosed with end-stage renal disease (ESRD) or amyotrophic lateral sclerosis (ALS) automatically qualify for Medicare upon diagnosis without a waiting period (Cubanski et al., 2016; Ulrich, 2014). Thus, the Medicare population includes 46 million older adults and 9 million younger adults with permanent disabilities. Forty-five percent of Medicare beneficiaries have 4 or more chronic conditions, 34% have a functional impairment, 31% have a cognitive or mental impairment, and 26% assess their health as fair or poor (Altman & Frist, 2015).
Medicare provides coverage for inpatient hospital stays; physician, outpatient, and preventive services; post-acute care; and outpatient prescription drugs. However, traditional Medicare has high cost sharing and has no limit on out-of-pocket spending. Medicare also does not cover dental care, hearing aids, or long-term services and supports, which are critical resources for most of the Medicare population, including seniors and individuals with disabilities. These gaps are filled with supplemental insurance, either purchased or obtained through an employer, Medicaid, or a Medicare Advantage plan (Altman & Frist, 2015). However, even with supplemental insurance, Medicare beneficiaries spend nearly three times more than beneficiaries without Medicare coverage on out-of-pocket health expenses, adding more financial burden for individuals with disabilities and their families (Cubanski et al., 2014).
In contrast, Medicaid is a joint state and federal program. As such, states must contribute some proportion of the cost of Medicaid, ranging from 26% to 50%. This program provides needs-based insurance and serves nearly 70 million people per year, or 1 in 5 Americans. Of the almost 70 million people covered by Medicaid, 33 million are children. Medicaid primarily provides coverage to low-income children and adults, but also provides services to people with disabilities and elderly individuals. It is the primary source of public funding for long-term care that is not covered by Medicare for individuals with disabilities and the elderly. As a result, Medicaid covers 1 in 5 Medicare beneficiaries and almost two-thirds of all nursing home residents (Altman & Frist, 2015).
Before the Omnibus Budget Reconciliation Act (OBRA) in 1981, children and adults with long-term healthcare needs were placed primarily in institutional or other restrictive and segregated settings. The OBRA, through Section 1915 of the Social Security Act, made the necessary changes to authorize state administrators to operate Home- and Community-Based Services (HCBS) waivers. The 1915(c) waivers allow states to waive specific Medicaid requirements and make it possible for people with disabilities at risk for being placed in institutions to receive services in their own homes or communities. After the Supreme Court Olmstead ruling, mandating that individuals with disabilities be offered services in integrated settings (Olmstead v. L.C. and E.W., 1999), waivers became even more appealing to states (Velott et al., 2015).
Yet, even after 55 years of enacting Medicare and Medicaid in 1965, individuals with disabilities continue to be a health disparity population in the United States. This population still experiences health disparities due to cultural incompetence, stigma and misunderstanding, and an inability to create policy changes that cover the population as a comprehensive way and meet their acute and long-term needs (Ulrich, 2014).
The Patient Protection and Affordable Care Act of 2010 (ACA; PubL No. 111-148) contains provisions aimed at tackling some of these barriers to care. Progress has been made in increasing healthcare access via the ACA. The main goal of the ACA is to significantly reduce the number of uninsured by providing a continuum of affordable coverage options through Medicaid and the Health Insurance Marketplaces. The ACA provided improved access to care and a key opportunity to reduce persistent health disparities faced by historically underserved populations.
While coverage gains were generally positive, challenges arose in plan selection and accessing care following enrollment. In other words, there were pre-enrollment challenges such as accessing enrollment resources (e.g., website, helpline) and obtaining detailed plan information, and post-enrollment barriers to needed care due to inadequate provider networks, high co-pays, or visit/service limitations (Lindner et al., 2018). In addition, coverage of the needs of individuals with disabilities has not been rectified (Ulrich, 2014). A combination of states’ rights to implement eligibility criteria, Medicaid being a target for budget cuts, and individuals with disabilities requiring frequent services and involving more costs than any other group has left many disabled persons without much-needed coverage. The ACA originally expanded Medicaid to anyone at 133 percent of the federal poverty line (FPL), but the Supreme Court made this optional following the June 2012 Supreme Court decision. According to the Centers for Medicare & Medicaid Services (CMS) guidance, there is no deadline for states to implement the Medicaid expansion. As of August 2021, 12 states are still not moving forward on the expansion (Kaiser Family Foundation, 2021); therefore, there is an urgent need for advocacy and persuasion to try to limit the force of partisan politics (Ulrich, 2014). Furthermore, coverage alone is not sufficient to improve health outcomes and achieve health equity among this population, who have strong negative social determinants of health, including poverty, poor access to education, unemployment, job insecurity, unhealthy housing, and exposure to general disadvantage. With growing recognition of the importance of social factors to health outcomes, a growing number of initiatives have emerged to address negative social determinants of health. These initiatives have focused attention on improving health outcomes within non-health sectors, as well as recognizing and addressing health-related social needs through the healthcare system (Artiga & Hinton, 2018).
Recently, President Biden’s American Jobs Plan includes a historic investment in Medicaid home and community-based services (HCBS). On June 24, 2021, the Better Care Better Jobs Act, S. 2210, was introduced in the United States Senate and referred to the U.S. Senate Committee on Finance. The bill would expand access to home- and community-based services (HCBS) under Medicaid, and for other purposes by providing $100 million for states to expand access to Medicaid HCBS and to strengthen the HCBS workforce, and provide states a 10% increase in the Medicaid Federal Medical Assistance Percentage (FMAP) for HCBS (Clearinghouse, 2021). These critical services would enable the elderly and people with disabilities to remain in their homes, stay active in their communities, and lead independent lives. According to the Better Care Better Jobs Act, S. 2210 (2021), the President’s proposal intends to expand access to good-quality care, lead to better pay and benefits for healthcare workers, enhance the quality of life for families, and help create middle-class jobs. This investment in Medicaid HCBS would create enhanced funding to strengthen long-term care today and in the future, building on the $12.7 billion short-term HCBS funding that passed as part of the American Rescue Plan.
The next step in further improving the quality of care, focusing on patients, is to address the significant challenges faced by individuals with disabilities. For example, disability-specific challenges in accessing healthcare still exist, including lack of quality of insurance coverage and accessible equipment in medical settings, and challenges in obtaining such services as sexual health education, fertility consultations, or parenting guidance.
Disability-Related Debates in the Healthcare System
The Lack of Quality of Insurance Coverage as Barriers to Access to Care
Individuals with disabilities are struggling to have quality access to healthcare. Health insurance coverage is a major determinant of access to healthcare. Being able to afford quality healthcare is a major concern in the disabled community. According to the previous studies, there is a high poverty rate among individuals with disabilities, and with the high cost of medication and other services, they are unable to afford this extra expense (Aldersey et al., 2018). In addition, many of this population needs far more health services than those without disabilities (Kaye, 2019; Kennedy et al., 2017; National Council on Disability, 2016). Individuals with disabilities are slightly more likely to have health insurance than those without disabilities; however, they are more likely to use public insurance (e.g., Medicaid) and often report problems finding a doctor or other healthcare provider willing to accept Medicaid even when insured than those without disabilities who have private insurance. Furthermore, one in five (i.e., 21%) of those who have ever been on Medicaid say that they have had problems when trying to enroll in the program, although their experiences with the Medicaid program were generally positive (Aldersey et al., 2018; Kaiser Family Foundation, 2011; Kennedy et al., 2017).
There are barriers to accessing quality care, depending on the type of insurance coverage one has. There is still no coherent and coordinated health system in the U.S. – it has multiple systems with no coherence due to our society’s piecemeal approach to the insurance systems and social welfare. In addition, health insurers control their costs by charging customers out-of-pocket fees, and by limiting the number of service providers covered by the plan. To understand some of the barriers a person with a disability faces, it is important to understand the complexity of the insurance systems, both private and public, and the qualifications of its applications. To be eligible for Medicare/Medicaid insurance coverage, one could be qualified in a variety of ways. Some eligibility is through work history, disability type (temporary or permanent), and/or age. For example, if a person is under the age of 18 and does not qualify for Medicare, there is a program for low-income families where one could obtain the state’s Children’s Health Insurance (S-CHIP). A person over the age of 65 is automatically eligible for Medicare and could qualify for both Medicare and Medicaid if their income is low. A working adult with disabilities can apply for Social Security Disability Insurance (SSDI) or the Supplemental Security Income (SSI) program to become eligible for Medicare or Medicaid (Kaye, 2019).
A working adult with a disability usually finds it difficult to afford private insurance coverage due to its high cost, as most are not eligible for employer-based group coverage and, in most cases, their condition would be pre-existing, which would exclude them from individual insurance (Kennedy et al., 2017). This was the case pre-ACA but has been changed since the Act was passed in 2010. The enactment of the ACA was to improve access to healthcare through both expanded public health coverage and improved availability and affordability of private insurance (Kaye, 2019). Major provisions of the ACA aimed to reduce high uninsurance rates among specific populations, including the youngest adults, lower-income families, and people whose preexisting health conditions had made it difficult to obtain affordable, comprehensive private insurance coverage through prohibitions against denying coverage, charging higher premiums, or limiting coverage for people with such conditions (Kaye, 2019).
The application for these insurances is long and tedious, as, in many cases, it could take even years to process. To be eligible as a person with a disability, one must provide medical evidence of impairments listed and accepted by social security. Acquiring these documents requires the person’s current medical history for which there are time limits and requirements. Much of the information is over 80 pages long and is complicated even for the average person. For families and caregivers, the process is intimidating, especially for racial/ethnic and immigrant populations, especially those whose English is a second language. For a person with a disability getting medical attention is vital. Kaye and colleagues (2019) have mentioned that an uninsured person is more likely to delay or not seek medical care and thus have a higher risk of being diagnosed with advanced diseases or have a higher rate of mortality than a person with insurance.
According to Kennedy and colleagues (2017), working-age adults with disabilities are now more likely to have insurance coverage and less likely to encounter access problems than before the full implementation of the ACA in 2014. However, compared to those without disabilities, this population continues to struggle with high healthcare costs that make it difficult to obtain the services they require. It is also clear that, despite important reforms in the private insurance market, most working-age adults with disabilities continue to rely on public insurance, particularly Medicaid and Medicare. Another study focusing on the impact of the ACA on working-age adults with disabilities, with a particular focus on those not previously eligible for public coverage who would benefit most from having affordable availability of both private and public coverage, found that following the implementation of the ACA, disparities based on disability status persisted, although the ACA improved overall access and reduced some disparities. However, substantial disparities persist. Disability status remains associated with a much greater risk of delayed or forgone care, and mental health disability is associated with a greater likelihood of uninsurance (Kaye, 2019).
The Lack of Accessible Equipment in Medical Settings as a Barrier to Prevention Services
There are significant barriers for women with disabilities (Mitra et al., 2015a). Prenatal care is a case in point. Lack of accessible medical offices, height adjusting examination tables, lift devices, and scales put women at risk of inadequate monitoring during pregnancy (Iezzoni et al., 2015; Mitra et al., 2017). This results in a lack of necessary examinations, a lack of routine prenatal care, increased safety issues, and possible secondary health issues for the mother and/or baby. Many OB/GYN providers do not have adequate medical devices, such as height-adjusting tables, lift devices, or appropriate scales to properly care for individuals with physical disabilities, despite regulations that mandate them. Research shows that 44% of providers refused medical care to patients who could not self-transfer onto fixed-height examination tables due to the facility’s inability to accommodate them (Lagu et al., 2015). Additionally, a study conducted by Mitra et al. (2017) reported that 60% of women who participated in their study had some level of difficulty trying to transfer onto the examination table unassisted. In a qualitative study performed by Iezzoni et al. (2015), some women with mobility disabilities reported never being weighed at any appointments, and one woman was asked to go to the Post Office to be weighed using a cargo scale. Other studies indicate that providers who did not have height-adjusting examination tables either bypassed a routine examination or inappropriately performed the examination while the person was in their wheelchair (Iezzoni et al., 2015). The participants’ narratives in previous studies reveal that the perinatal care system is not set up with women with physical disabilities in mind. In other words, it reflects that the pregnant body is assumed to be a non-disabled body, and the practices and physical space of perinatal care settings are set up according to this assumption (Tarasoff, 2017). These negative and traumatic experiences can adversely affect the women’s psychosocial outcomes.
The lack of examination tables that can adjust to height or proper lift devices has become a major physical safety concern for many people. In a study performed by Lagu, et al. (2015), one woman reported being dropped three times during an attempt by office staff to transfer her to a fixed height examination table. This could have caused significant physical trauma to both mother and baby. Many providers that do accept patients with mobility disabilities do not have height-adjusting examination tables or lift devices. They also expect the patient to either be able to self-transfer or to have someone come with them to assist in transferring them. This is not always a viable or safe option. The patient is also unable to rely on office staff for assistance, as many of them are not trained in physically transferring patients.
The consequences of inadequate healthcare go beyond prenatal care for women with physical disabilities. Secondary issues can be medical, physical, mental, or emotional (Wisdom et al., 2010). Excessive weight gain, particularly in the third trimester can lead to preeclampsia (Lagu et al., 2015). Women with physical disabilities often have the monitoring of their weight overlooked due to the lack of accessible scales. Some women have reported their providers overlooking their weight progress for the duration of their pregnancy (Iezzoni et al., 2015). The exposure to substandard treatment can often result in women with physical disabilities feeling humiliated or emotionally distressed (Lagu et al., 2015). Stress can impact the baby and could impact the mental health of the mother. Additionally, some women have isolated themselves after perceiving negative judgment from physicians (Lagu et al., 2015). This could lead to women withholding reports of health changes or concerns that need attention. Women with physical disabilities may require additional guidance and support from their healthcare providers, particularly when they see specialists like gynecologists or obstetricians. Women with disabilities are at a greater risk of experiencing symptoms of postpartum depression (PPD) than other women (Mitra et al., 2015b). As such, screening for PPD among new mothers with disabilities as well as timely referral of those with a PPD diagnosis is critical to the health of mothers with disabilities and their children (Byrnes & Hickey, 2016; Mitra et al., 2015b).
Beyond prenatal and postnatal care, women require routine reproductive care such as pelvic exams including a Papanicolaou (Pap) smear and mammography examinations. The pelvic examination has proven essential in determining a woman’s cervical, ovarian, and uterine health. The Pap smear is vital in detecting abnormalities including cervical cancer (Kavoussi et al., 2008). The pelvic examination and Pap smear are typically done in a gynecologist’s office and require the use of an examination table with stirrups. The mammography examination detects abnormalities or cancer within the breasts and is usually performed at diagnostic imaging centers. It is crucial that all women receive this care. However, studies have found that women with disabilities have a lower likelihood of having preventive screening performed (Wisdom et al., 2010). They are at greater risk for experiencing health disparities, including decreased access to quality care and lower rates of screening for both cervical and breast cancer. For example, women with developmental disabilities also have a lower likelihood of having a recent mammogram and are less likely to have received a recent Pap test, compared to women without disabilities (Havercamp et al., 2004; Parish et al., 2013a, 2013b; Swaine et al., 2014). Also, there is a racial disparity in the receipt of mammography among women with intellectual disabilities. A study using medical record data found that African American women with intellectual disabilities receive mammographies at significantly lower rates than White women with intellectual disabilities, despite the high rates of mortality from breast cancer among African American women (Parish et al., 2013a).
Not adhering to or enforcing regulations and guidelines to mandate accessibility to medical devices often have made women feel disrespected by medical providers and the healthcare system (Lagu et al., 2015). Significantly, 40.3% of women have reported that they believe their provider knew little to nothing about their disability or how their disability could impact their pregnancy (Mitra et al., 2017). Women should be able to have a certain level of comfort with their physicians, particularly those with intimate contacts such as gynecologists and obstetricians. Clients’ positive perception of their providers is vital to ensure a collaborative relationship between the patient and doctor. Many women have perceived their physicians as having negative outlooks on women with disabilities bearing children. They were often made to feel that they would be inadequate parents (Mitra et al., 2017). Other women believed that the providers they visited failed to recognize their strengths or their desire for optimal independence (Iezzoni et al., 2015). Both approaches can lead to the patient feeling stripped of their dignity.
All the findings mentioned above can be particularly concerning for those who are considering becoming or are currently pregnant, despite regulations and policies to provide assistance and protection. The Americans with Disabilities Act of 1990 (ADA) provides guidelines for accessibility for individuals with disabilities. Most of these guidelines refer to accessibility by means of elevators, ramps, the width of doorways, adequate bathrooms, etc. (Americans with Disabilities Act, 1990). However, the accessibility of healthcare equipment in provider facilities is not identified in the original publication of the ADA to which most people commonly refer. There was an update in 2010 to the ADA regarding accessible examination facilities, rooms, and devices for individuals with mobility disabilities (Americans with Disabilities Act Accessibility Guidelines, 2010). However, providers do not always comply with these guidelines due to not receiving training on how to best provide hands-on care for those mothers and lack of education about the best strategies for serving patients with disabilities including facilitating physical access (Lagu et al., 2015; Mitra et al., 2016). For example, Section 4302 of the Affordable Care Act requires provider organizations to report on their efforts to train providers about working with people with disabilities, and Section 5307 requires that providers receive disability cultural competence training. Still, those provisions have not been enforced, and there are no specific training requirements regarding perinatal care for women with disabilities for obstetricians or any nursing specialties (Mitra et al., 2016).
The Challenges in Obtaining Sexual Health Education, Fertility Consultations, or Parenting Guidance
Women with disabilities struggle with social and environmental barriers related to maintaining health and well-being when compared with women without disabilities. The sexual and reproductive rights of the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) have become part of the fundamental human rights in the world (UN, 2007). However, women with disabilities are more prone to experience sexual abuse and victimization as they are considered to be weak and hence easy targets (Rugoho & Maphosa, 2017). The sexual rights of women with disabilities are further compromised by factors such as the negative attitudes of families and society, and cruel religious and cultural practices (Rugoho & Maphosa, 2015). There has been historical stigmatization faced by women with disabilities. As shown in the U.S. legal history, women with disabilities have been subject to forced sterilization despite that many disabilities are not heritable. During the eugenics movement in the early 20th Century, many states in the United States passed laws prohibiting women with intellectual and developmental disabilities (IDD) from marrying and procreating (Cepko, 1993). The US Supreme Court’s 1927 decision in Buck v. Bell endorsed involuntary sterilization on the grounds that it was necessary “to prevent our being swamped with incompetence. It is better for all the world if…society can prevent those who are manifestly unfit from continuing their kind” (Buck v. Bell, 1927). Involuntary sterilization, as well as institutionalization, prevented many women with IDD from becoming pregnant during the first half of the 20th Century, resulting in the forced sterilization of at least 60,000 women with IDD (Cepko, 1993) and the denial of their reproductive rights (Parish et al., 2015). The effects of negative attitudes also cascade to a healthcare provider (Silvers et al., 2016; Treacy et al., 2018). Thus, women with disabilities are more likely to have unmet sexual and reproductive health needs than their counterparts.
Of note, those with developmental disabilities or disabilities acquired early in life have been excluded from discussions about sex and reproduction during their school years (Smeltzer et al., 2007). Knowledge regarding sexuality creates a greater ability to protect oneself from harm, including sexual abuse and exploitation, unwanted pregnancies, and sexually transmitted diseases. This knowledge can foster the ability to be cognizant of the sexual boundaries and expectations prevalent within society. However, people with disabilities are often considered asexual by healthcare providers, who, because of this fail to discuss with them issues around safe sex, contraception, pregnancy, and gynecologic care (Smeltzer et al., 2007; Swaine et al., 2014). This can result in a lack of information about reproductive function and pregnancy.
Previous studies indicate that there are barriers to obtaining sexual health education for individuals with disabilities (Barnard-Brak et al., 2014; Eisenberg et al., 2013; Treacy et al., 2018; Wilkenfeld & Ballan, 2011). Treacy and colleagues (2018) emphasized that these barriers are closely intertwined with sociocultural taboos regarding sexuality. Further, they argued that taboos may suggest that disability and sexuality are deviant and, therefore, inevitably create an additional layer of complexity to each of the barriers such as “lack of teacher training”; “lack of teacher knowledge and confidence resulting in concern, anxiety, and fear”; “parental anxiety and fear”, “ the need for school/teacher and parent partnerships”; “lack of valid and reliable sexual health education”; and “lack of federal funding specifically designed for students with disabilities based on comprehensive sexual health education” (p. 72).
There are disparities in access to reproductive health services, including family planning, contraception, screening for sexually transmitted infections, maternal health services, and fertility services among women with disabilities (Silvers et al., 2016; Mosher et al., 2017). Also, it has intertwined with the socio-economic status of this population. For instance, the most considerable differences in receipt of family planning services by disability status were seen among women with low education, low income, and those who were not working (Mosher et al., 2017). Barriers to obtaining reproductive health services can include the negative attitudes of healthcare providers as well as a lack of physical access (Smeltzer et al., 2007). Healthcare providers could hold false assumptions about the decision-making abilities and the sexual and reproductive interests of individuals with disabilities. For example, clinicians may dismiss the possibility of obtaining informed consent when patients have intellectual or developmental disabilities, or they may be inexperienced in helping patients with disabilities understand complicated medical issues or unwilling to take the time to explain when patients have difficulties in communication. In addition, clinicians could assume that women with disabilities have no sexual or reproductive interests or that they are sexually inactive, celibate, or asexual (Silvers et al., 2016; Swaine et al., 2014). Incorrect assumptions like these may lead to a lack of access to medically indicated reproductive care for women with disabilities than other people of similar age and sex. Also, women with physical disabilities have encountered inaccessible clinic rooms and examination tables as well as inaccessible clinic forms and information, all preventing women with sensory disabilities or intellectual and developmental disabilities from obtaining high-quality contraceptive care (Horner-Johnson et al., 2021).
Women with disabilities can face challenges in accessing fertility consultations or parenting guidance due to biases on the part of some in the medical community. For example, clinicians may assume exaggerated or misdirected concerns regarding the risk of pregnancy, a low probability of treatment success regarding fertility services, and incorrect beliefs about parenting ability (Silvers et al., 2016). Specifically, there are judgments about fitness to parent that motivate some medical providers’ reluctance to provide fertility services. As such, these mistaken assumptions and judgments about parenting ability may discourage referrals for fertility therapy. Previous studies reported that women with disabilities who have experienced pregnancy frequently are faced by complaints about their selfishness, based on the assumption that their relatives will have to raise their children or that their children will become burdens to taxpayers (National Council on Disability, 2012). In addition, women with disabilities may also be discouraged from pregnancy out of an improper fear that their children will in turn have disabilities (Silvers et al., 2016). This reasoning represents the both misleading and profoundly biased perspectives that some in the medical community have about women with disabilities.
The Negative Effects of Prenatal Genetic Testing and Gene Editing Approaches on Future Generations of Disabled People
With the emergence and refinement of reproductive genetic technologies (RGTs), especially gene-editing technologies like CRISPR/Cas9, potential parents could prevent their future children from being born with a disability (Benston, 2016). RGTs have been categorized as either technologies allowing genetic additions, deletions, or modifications that alter an embryo’s DNA, or as processes such as selective abortion to eliminate fetuses with unwanted traits or pre-implantation genetic diagnosis (PGD) allowing parents to have children free from genetic abnormalities without directly manipulating DNA (Benston, 2016). Inevitably, such technologies provide potential parents unprecedented control over the characteristics of their future children. In other words, this technology would allow parents to edit out disabilities from their embryos in order to give birth to a “normal” child. For example, this technology could be applied not only to eradicate a genetic disease such as cystic fibrosis, but also across the germline to alter heritable traits. The latter application could be used to create so-called “designer babies” with preferred physical and potentially even intellectual and emotional traits. With this reason, many within the disabled community, including disability studies scholars and activists, have pushed back against the use of gene editing (Beitiks, 2013; Benston, 2016). These technologies can lead to a modern-day Eugenics movement, a movement that once allowed society to prevent those who are considered manifestly “unfit” from continuing their kind and preventing children with disabilities from being born (Buck v. Bell, 1927). According to Emily Beitiks (2013), the development of such technologies reflects our society’s negative perceptions and attitudes toward people with disabilities and their community, such as “people with disabilities are living a sad, tragic existence, and only through progress in the genetic sciences can we spare their suffering in future people.” In addition, the disability community argues that while our society continues to invest millions of dollars on anything that might help us eliminate disability, people with disabilities are still struggling to make our society more accessible because these social changes are always considered as “too costly.” However, changes to the built environment, as well as cultural changes of discriminatory attitudes would lead to more widely shared impacts. Furthermore, leading scientists also have warned about the risks of using CRISPR/Cas9 gene editing on embryos because the editing has caused unintended changes, such as loss of an entire chromosome or big chunks of them in more than half of the cases of their experiment (Zuccaro et al., 2020).
Personal Care Services (PCS) as a Key Aspect of Community Inclusion in the Disability Community
Individuals with disabilities need services in place that are necessary for their daily living. One of these essential services is personal care services (PCS) which provide individual assistance to people with disabilities and older adults to facilitate their living independently in the community due to the deinstitutionalization of people with IDD and community living of people with disabilities (Bogenschutz et al., 2014). Direct support professionals (DSPs), often called direct care workers or personal care aides (Hewitt & Lakin, 2001; Hewitt & Larson, 2007), provide PCS. DSPs are critical for the community integration of people with disabilities. They are key to providing and promoting quality care for millions of people in the United States, including individuals with disabilities. Therefore, the lack of DSPs can also keep individuals with disabilities from creating meaningful relationships, maintaining good health, and being integrated into the community (Friedman, 2018).
The DSPs provide a wide and complex range of support and services, such as health and safety, relationships, networking, communication, personal care, transportation, advocacy, financial duties, community living, crisis prevention, household tasks, education on self-care skills, promoting self-determination, and managing finances (Bogenschutz et al., 2014; Friedman, 2018). These services are usually ordered by the client’s physician and are based on an evaluation provided by their physicians. This is also based on what their needs are, what is appropriate and cost-effective for service. DSPs are a lifeline for people with disabilities providing for the physical, emotional, mental, chronic, and temporary needs of this population. They work with a cross-section of the population including children and adults with disabilities assisting disabled individuals in completing basic daily routines and work in a variety of settings, including individual’s homes, group homes, private and public institutions, nursing homes, and job support programs (Bogenschutz et al., 2014). They are a reinforcement that provides a deeper sense of independence and a better quality of life (Friedman, 2018).
In addition, there are adult residential services for individuals with developmental disabilities that provide a home and offer medical services such as speech therapy; counseling; nursing care; and recreational, transportation, and nutrition services for individuals over 21 years old. These community-based homes provide the opportunity for individuals with developmental disabilities to live as independently as they can and a chance to become an integral part of a community with neighbors, co-workers, and volunteers based on their preferences, interests, and responsibilities. According to each person’s individual service plan, supports are provided by highly trained DSPs and clinical professionals who provide services addressing communication and choice, self-advocacy, self-direction and travel, career guidance and development, community participation, and other needs involving speech-language pathology, nursing, psychology, nutrition, and recreation, etc. (Friedman, 2018).
PCS is covered by Medicaid home and community-based services (HCBS). These critical services enable people with disabilities to remain in their homes, stay active in their communities, and lead independent lives. Over 3.5 million older adults and people with disabilities receive Medicaid HCBS. Though all states provide coverage for some HCBS services, eligibility and benefit standards and policies vary by state, which leads to significant variation and gaps in coverage. Some states cap the number of individuals who may receive services, which has left almost 820,000 Americans on wait lists (Kaiser Family Foundation, 2018). Also, there is a high annual turnover rate for DSPs (Hewitt, 2014; Hewitt & Lakin, 2001) anywhere from 30% to 70% a year (Bogenschutz et al., 2014). Almost this entire turnover is due to DSPs quitting rather than being fired because of increased workload, extremely low wages with lack of benefits, and lack of training (Friedman, 2018).
Policy and Practice Implications for Working with People with Disabilities in the Healthcare System
First, it is vital to recognize individuals with disabilities as a health disparity population in the healthcare system. Like everyone else, they have the same healthcare needs, such as preventive and specialty care services. However, they are less likely to access healthcare services than individuals without disabilities due to healthcare access barriers. Therefore, they experience unmet healthcare needs that could negatively affect their health outcomes. Disparity status for people with disabilities would allow federal and state governments to actively work to reduce inequities (Krahn et al., 2015). Moreover, healthcare providers, social workers, and public health practitioners’ knowledge of these barriers and how a person’s various social identities are intertwined with the obstacles can help provide strategies to improve healthcare access and promote the inclusion of people with disabilities in disease prevention and health promotion programs.
Research on disparities in health and healthcare can help identify vulnerable groups, including racial/ethnic minority, immigrant, low-income, and socially disadvantaged groups, who are at high risk of disability, who are uninsured, and who could benefit from public policy and social interventions designed to reduce the impact of disability and uninsurance. For example, a recent policy brief reported characteristics of people in the insurance coverage gap as a major barrier in access to care (Garfield et al., 2021). As of August 2021, 12 states have not adopted the ACA provision to expand Medicaid to adults with incomes below the 138% poverty line (Kaiser Family Foundation, 2021). As a result, 2.2 million people in these states fall in the coverage gap. These people would be eligible for Medicaid if their state adopted the ACA expansion. However, they currently do not qualify for Medicaid and have incomes below the poverty level, so that it prevents them from being eligible for premium subsidies in the ACA Marketplace (Garfield et al., 2021). People in the coverage gap are disproportionately people of color, nationally, comprising nearly six in ten (59%) people in the coverage gap, and more than one in six (15%) of the population have a functional disability, including people who have serious difficulty with hearing, vision, cognitive functioning, mobility, self-care, or independent living often requiring significant current healthcare needs (Garfield et al., 2021).
Another policy brief examined trends in health coverage by race and ethnicity between 2010 through 2019 using American Community Survey data for the nonelderly population. The findings show that racial/ethnic disparities in coverage have been reduced due to the ACA, but did not eliminate disparities in health coverage (Artiga et al., 2021). According to this analysis, there were large gains in coverage across all racial/ethnic groups under the ACA between 2010 and 2016. In particular, the uninsured rate over the period fell from 32.6% to 19.1% among Hispanic people. Despite these gains in coverage, people of color remained more likely to be uninsured than their White counterparts as of 2016. Also, beginning in 2017, coverage gains began reversing, and the number of uninsured increased for three consecutive years, with the largest significant increase in uninsured rate over this period among nonelderly Hispanic people (Artiga et al., 2021). Moreover, uninsured nonelderly Hispanic and Asian people are less likely than their White counterparts to be eligible for coverage due to their immigrant and/or non-citizenship status. This trend is also mirrored in the disabled community (Magana et al., 2012; Parish et al., 2013c; Rosen-Reynoso et al., 2016).
Thus, beyond insurance coverage, it is important to address inequities across the broad range of other social and economic factors and other inequities within the healthcare system that could lead to poorer quality of care and health outcomes for people with disabilities. Emphasis on race, ethnicity, and socioeconomic factors beyond health insurance coverage is consistent with the national health initiative Healthy People 2030, which has an increased focus on health equity, social determinants of health, and health literacy, with a new focus on well-being (US Department of Health and Human Services, 2021).
Second, strategies to make healthcare more affordable and accessible for people with disabilities are key to improving their health. Studies have found that people with disabilities are less likely to get the preventive healthcare services they need to stay healthy (Marrocco & Krouse, 2017). Increasing access to preventive healthcare such as cancer screenings can prevent both disease and early death among individuals with disabilities. The number of people getting preventive services has increased in recent years, but there are still disparities based on various social identities, including race/ethnicity, gender, and immigration status, etc. Specific strategies at the system level, such as providing reduced copays, the system-wide use and funding of interpreters and multilingual tools, use of community health workers who are members of the immigrant community, and patient navigators may reduce language and cultural barriers to healthcare among immigrant populations through facilitation, education, and advocacy (Linton & Green, 2019; Son et al., 2018). In addition, team-based care can help people with disabilities get recommended preventive care services in a timely manner. As a practice level strategy, the medical home, emphasizing comprehensive care and enhanced care coordination, can be critical support for immigrant families who have children with disabilities. For example, integrated mental health, nutrition, social work, and patient navigation services allow for ease of access and for a reduction in stigma and barriers (Linton & Green, 2019). Additionally, it is vital to have better coordination between healthcare professionals and professional care staff in residential facilities, such as direct support professionals (DSPs). Professional care staff or DSPs working with people with disabilities need increased training and awareness about health promotion and cancer prevention (Hanna et al., 2011).
Another example of a practice recommendation that might prove beneficial is providing a prenatal care team to help assist and give guidance to women with physical disabilities. According to Byrnes and colleagues (2016), women who have comprehensive and coordinated care teams to assist them often receive more assistance and support than solely working with their practitioner. A care team would consist of a primary health physician (PCP), any specialty practitioners, a social worker, a dietary consultant, an occupational therapist (OT), and a physical therapist (PT) working closely with the person with a disability. Having the collaboration of these clinicians and healthcare providers, coordinated by a social worker, can ensure adequate, comprehensive, and supportive assistance in obtaining medical devices, tending to specific dietary needs, securing necessary appointments, and advocating for required accessibility. It is also important to note that this coordinated care team can help individuals with disabilities transit from prenatal care to postnatal care. Some individuals with physical disabilities may require certain devices to assist in caring for their newborn baby. Additionally, since women with physical disabilities are more likely to experience postpartum depression (Byrnes et al., 2016), it is beneficial to have access to professionals that can provide resources and guidance on postnatal care. Support persons such as partners and family members of these women should understand a strong desire to become mothers of women with disabilities. It is vital for these women that their desire to become mothers and their motherhood is recognized as normal by their social and family environment (Commodari et al., 2022). Previous studies show that women with disabilities’ desire for normality face many prejudices about disability and their parenting skills based on an idea of perfect physical functioning, particularly for women with disabilities who wish to become mothers (Commodari et al., 2022; Powell et al., 2017).
Lastly, it is also important to note and highlight the strengths and abilities of people with disabilities and to promote their dignity and worth for people with disabilities based on the ethical principles of social workers (NASW, 2021). Social workers are necessary for advocacy efforts to diminish the inequities and barriers currently faced by this vulnerable population. They are also essential in fighting for ethical healthcare services, including ensuring the dignity and worth of people, which is a core social work value (NASW, 2021). For example, many women with disabilities wish to become parents and should be given the right to self-determine their choice. Also, another core social work value, social justice, is affected by social workers who strive to ensure access to needed information, services, and resources; equality of opportunity; and meaningful participation in decision-making for all people (NASW, 2021). Individuals with disabilities, and particularly those individuals who also experience marginalization related to their race or ethnicity, gender identity, culture, or socioeconomic status are especially vulnerable throughout their life course. Social work practitioners and researchers have a crucial role in identifying these vulnerable groups to effectively challenge social injustice (Bishop-Fitzpatrick et al., 2019). The care team option can be essential in providing needed information, services, and resources, implementing assistance, and ensuring the proper standard of care and the right to self-determination. Therefore, it is vital that social workers work closely with individuals with disabilities to ensure that they can perform at optimal independence and are able to self-determine their care plan. This will promote the core ethics of social work, including the dignity and worth of the person and social justice, which every individual deserves.
The Yuna Choi’s Case
Scenario: You are a medical social worker and supervisor at a children’s hospital. The department of social work in the children’s hospital specializes in working closely with patients and family members who are experiencing mental, emotional, family, and/or financial stress due to their or their loved one’s medical condition. Your worker comes in for supervision of a new case. Here are the details:
Yuna was born in January 2019 at 31 weeks with a congenital developmental abnormality. Yuna’s mom, Hyejin, 35, was born in South Korea and came to the United States with her husband, Hyunsoo. She was 28, he was 31. They have three children. Hyejin’s first language is Korean; she speaks very little English, although she could read and understand English. However, Hyunsoo did not see a need for her to learn English and he was very busy with his work.
Yuna spent a total of eight weeks in two different hospitals. Meanwhile, Yuna’s father had to change jobs, and the change affected the family’s health insurance. Since Yuna was born in January and it was a new insurance year, they had to spend most of their savings to cover the hospital admission costs.
Yuna struggled to gain weight. She was not as active as she should be, compared to her siblings, but everyone reassured her parents that she should recover soon. When she came home, Hyejin was still suspicious of things not being right, so she brought Yuna in for frequent check-ups due to her weight gain issues. She questioned why her daughter was not doing something when she was supposed to with the help of her husband, and the doctors and specialists were saying that she would catch up. According to her cultural tradition involving respect for authority figures, Hyejin had faith in their expertise and care and stopped asking questions about her daughter.
At the age of eight months, Yuna started Early Intervention (EI), and she became eligible for some equipment for her mobility and feeding at home. The home therapists, doctors, and Hyejin and Hyunsoo filled out all the paperwork and sent it to the Early Intervention Office for approval. They waited six months for the approval to come. When Yuna’s father called to investigate the delay, the agency told them it was waiting for approval from the Early Intervention Office and there was nothing they could do. However, Yuna needed the equipment right away. Hyejin felt that no one cared and she got frustrated. Hyunsoo called the agency and found out who was responsible for the approval of the request. He wrote them a long email at night, expressing their frustration and how it made them feel helpless. The next morning, they received an email of approval for the equipment request.
At one year old, Yuna had her first seizure and was diagnosed with progressive epilepsy. Hyejin would take her for her therapy appointments in the city. Many people in the community and online forums recommended applying for a Medicaid Waiver. However, Hyejin wasn’t sure if Yuna would be eligible, and it required so much of their family’s time and effort to know how to apply for it, that due to her language barrier and her husband’s busy work schedule, they postponed it. At age three, Yuna had a gastrostomy tube placement because of her failure to thrive. As time went on, Yuna began to develop pneumonia, and at age four, she was diagnosed with obstructive lung disease. At this point, Yuna had weekly doctors’ appointments and ongoing EI therapy sessions, to which Hyejin took her weekly for outside treatments in the city. Hyejin became a healthcare system navigator, time manager, care coordinator, nurse, and therapist for Yuna. She didn’t work, but she was Yuna’s assistant, which felt like a full-time job. In addition, she completely relied on her husband’s help regarding making doctors’ appointments, finding resources, and applying for disability benefits due to her language barrier. In addition, she tried to use an interpreter provided by hospitals to explain Yuna’s situation and the family’s needs; however, she discovered that she was not receiving clear and effective communication and that the times given for meeting with doctors were too short, so she stopped using the interpreter service.
Between the doctor’s appointments, diagnosis, and therapies, Yuna entered another chapter of her life, where she became a child with special healthcare needs (CSHCN). Hyejin had no option but to apply for the Medicaid Waiver since it would benefit Yuna. The process was long and hard. Social Security requested pages of detailed information from each doctor Yuna had seen in each hospital admission she had had in the past. She encountered many barriers, one document missing or one not updated, and hours-long discussions regarding financial eligibility. She went back and forth at least three times, and at the final appointment, she almost begged the officer to give her the Medicaid Waiver Yuna needed. She was told that they would inform her at a later date. Following this appointment, Yuna had a major seizure and ended up in a coma for three weeks. During this devastating time, your worker met with Hyejin and Hyunsoo in the children’s hospital and is trying to help the family get the Medicaid Waiver.
- How does intersectionality play out in this case?
- How might you use anti-oppressive practice techniques?
- What is the role of critical cultural competence for the social worker in this case?
- How could you apply the guiding principles of disability social work practice (from chapter 1)?
- In what ways do we see structural ableism, sexism, and consideration of cross-cultural aspects play out?
Aldersey, E., Dassah. H., McColl, M.A. et al. (2018). Factors affecting access to primary healthcare services for persons with disabilities in rural areas: A “best-fit” framework synthesis. Global Health Research and Policy 3(36), 1-13. https://doi.org/10.1186/s41256-018-0091-x
Altman, D., & Frist W.H. (2015). Medicare and Medicaid at 50 years: Perspectives of beneficiaries, healthcare professionals and institutions, and policy makers. Jama, 314(4), 384-395. https://doi.org/10.1001/jama.2015.7811
Americans With Disabilities Act of 1990, 42 U.S.C. § 12101 et seq. (1990). https://www.ada.gov/pubs/adastatute08.htm
Americans with Disabilities Act Accessibility Guidelines (ADAAG). (2010). https://www.ada.gov/2010_regs.htm
Artiga, S., Hill, L., Orgera, K., & Damico, A. (2021, July 16). Health coverage by race and ethnicity, 2010-2019. https://www.kff.org/racial-equity-and-health-policy/issue-brief/health-coverage-by-race-and-ethnicity/
Artiga, S. & Hinton, E. (2018). Beyond healthcare: The role of social determinants in promoting health and health equity. https://files.kff.org/attachment/issue-brief-beyond-health-care
Association of Social Workers. (2021). The Code of Ethics. https://www.socialworkers.org/About/Ethics/Code-of-Ethics/Code-of-Ethics-English
Barnard-Brak, L., Schmidt, M., Chesnut, S., Wei, T., & Richman, D. (2014). Predictors of access to sex education for children with intellectual disabilities in public schools. Intellectual and Developmental Disabilities, 52(2), 85–97. https://doi.org/10.1352/1934-9556-52.2.85
Beitiks, E. (2013). Reasons why we need people with disabilities in the CRISPR debates. https://longmoreinstitute.sfsu.edu/5-reasons-why-we-need-people-disabilities-crispr-debates
Ben-Moshe, L., & Magaña, S. (2014). An introduction to race, gender, and disability: Intersectionality, disability studies, and families of color. Women, Gender, and Families of Color, 2(2), 105-114. https://doi.org/10.5406/womgenfamcol.2.2.0105
Benston, S. (2016). CRISPR, a crossroads in genetic intervention: Pitting the right to health against the right to disability. Laws, 5(1), 1-15. https://doi.org/10.3390/laws5010005
Better Care Better Jobs ACT, (S. 2210 / H.R. 4131). http://www.advancingstates.org/sites/nasuad/files/Better%20Care%20Better%20Jobs%20Act%20Text%2006-21-21%20For%20Distribution.pdf
Bishop-Fitzpatrick, L., Dababnah, S., Baker-Ericzén, M. J., Smith, M. J., & Magaña, S. M. (2019). Autism spectrum disorder and the science of social work: A grand challenge for social work research. Social Work in Mental Health, 17(1), 73-92. https://doi.org/10.1080/15332985.2018.1509411
Blanchfield, L., & Brown, C. (2015, January). The United Nations Convention on the Rights of Persons with Disabilities: Issues in the US ratification debate. Library of Congress, Congressional Research Service.
Bogenschutz, M. D., Hewitt, A., Nord, D., & Hepperlen, R. (2014). Direct support workforce supporting individuals with IDD: Current wages, benefits, and stability. Intellectual and Developmental Disabilities, 52(5), 317-329. doi:10.1352/1934-9556-52.5.317
Bost, S. (2010). Encarnación. Fordham University Press.
Brown, H. K., Plourde, N., Ouellette-Kuntz, H., Vigod, S., & Cobigo, V. (2016). Brief report: Cervical cancer screening in women with intellectual and developmental disabilities who have had a pregnancy. Journal of Intellectual Disability Research, 60(1), 22–27. https://doi.org/10.1111/jir.12225
Byrnes, L., & Hickey, M. (2016). Perinatal care for women with disabilities: Clinical considerations. Journal for Nurse Practitioners, 12(8), 503-509. https://www.npjournal.org/article/S1555-4155(16)30300-2/pdf
Buck v Bell, Superintendent, 274 US 200 (1927).
Cepko, R. (1993). Involuntary sterilization of mentally disabled women. Berkeley Journal of Gender, Law & Justice, 8, 122–165.
Clearinghouse. (2021, July 2). http://www.advancingstates.org/node/72751
Commodari, La Rosa, V. L., & Nania, G. S. (2022). Pregnancy, Motherhood and Partner Support in Visually Impaired Women: A Qualitative Study. International Journal of Environmental Research and Public Health, 19(7), 4308–. https://doi.org/10.3390/ijerph19074308
Cubanski, J., Nueman, T., & Damico, A. (2016, August 12). Medicare’s Role for People Under Age 65 with Disabilities. https://www.kff.org/medicare/issue-brief/medicares-role-for-people-under-age-65-with-disabilities/
Cubanski J, Swoope C, Boccuti C, et al. (2015, March 20). A primer on Medicare: Key facts about the Medicare program and the people it covers. http://kff.org/medicare/report/a-primer-on-medicare-key-facts-about-the-medicare-program-and-the-people-it-covers/
Cubanski J, Swoope C, Damico A, Neuman T. (2014, January 9). Healthcare on a budget: The financial burden of health spending by Medicare households. http://kff.org/medicare/issue-brief/health-care-on-a-budget-the-financial-burden-of-health-spending-by-medicare-households/
Dababnah, S., Shaia, W. E., Campion, K., & Nichols, H. M. (2018). “We Had to Keep Pushing”: Caregivers’ perspectives on autism screening and referral practices of Black children in primary care. Intellectual and Developmental Disabilities, 56(5), 321-336. https://doi.org/10.1352/1934-9556-56.5.321
Eisenberg, M., Madsen, N., Oliphant, J., & Sieving, R. (2013). Barriers to providing the sexuality education that teachers believe students need. Journal of School Health, 83(5), 335–342. https://doi.org/10.1111/josh.12036
Eneriz-Wiemer, M., Sanders, L. M., Barr, D. A., & Mendoza, F. S. (2014). Parental limited English proficiency and health outcomes for children with special healthcare needs: A systematic review. Academic Pediatrics, 14(2), 128-136. https://doi.org/10.1016/j.acap.2013.10.003
Friedman, C. (2018). Direct support professionals and quality of life of people with intellectual and developmental disabilities. Intellectual and developmental disabilities, 56(4), 234-250. https://doi.org/10.1352/1934-9556-56.5.234
Garfield, R., Damico, A., & Rudowitz, R. (2021, July 29). Taking a closer look at characteristics of people in the coverage gap. https://www.kff.org/policy-watch/taking-a-closer-look-at-characteristics-of-people-in-the-coverage-gap/
Hanna, L. M., Taggart, L., & Cousins, W. (2011). Cancer prevention and health promotion for people with intellectual disabilities: An exploratory study of staff knowledge. Journal of Intellectual Disability Research, 55(3), 281-291. https://doi.org/10.1111/j.1365-2788.2010.01357.x
Havercamp, S. M., Scandlin, D., & Roth, M. (2004). Health disparities among adults with developmental disabilities, adults with other disabilities, and adults not reporting disability in North Carolina. Public Health Reports, 119(4), 418–426. https://doi.org/10.1016/j.phr.2004.05.006
Havercamp, S. M., & Scott, H. M. (2015). National health surveillance of adults with disabilities, adults with intellectual and developmental disabilities, and adults with no disabilities. Disability and Health Journal, 8(2), 165-172. https://doi.org/10.1016/j.dhjo.2014.11.002
Hewitt, A. (2014). Presidential address, 2014—Embracing complexity: Community inclusion, participation, and citizenship. Intellectual and Developmental Disabilities, 52(6), 475-495. doi:10.1352/1934-9556-52.6.475
Hewitt, A., & Larson, S. (2007). The direct support workforce in the community supports to individuals with developmental disabilities: Issues, implications, and promising practices. Mental Retardation and Developmental Disabilities Research Reviews, 13(2), 178-187. doi:10.1002/mrdd.20151
Hewitt, A., Larson, S., Edelstein, S., Seavey, D., Hoge, M., & Morris, J. (2008, Novemeber). A synthesis of direct service workforce demographics and challenges across intellectual/developmental disabilities, aging, physical disabilities, and behavioral health. National Direct Service Workforce Resource Center, University of Minnesota. https://rtc.umn.edu/docs/Cross-DisabilitySynthesisWhitePaperFINAL.pdf
Horner-Johnson, W., Klein, K. A., Campbell, J., & Guise, J. M. (2021). Experiences of women with disabilities in accessing and receiving contraceptive care. Journal of Obstetric, Gynecologic & Neonatal Nursing. Online version. https://doi.org/10.1016/j.jogn.2021.07.005
Iezzoni, L. I., Yu, J., Wint, A. J., Smeltzer, S. C., & Ecker, J. L. (2014). General health, health conditions, and current pregnancy among US women with and without chronic physical disabilities. Disability and Health Journal, 7(2), 181-188. https://doi.org/10.1016/j.dhjo.2013.12.002
Iezzoni, L. I., Wint, A. J., Smeltzer, S. C., & Ecker, J. L. (2015). Physical accessibility of routine prenatal care for women with mobility disability. Journal of Women’s Health, 24(12), 1006-1012. https://doi.org/10.1089/jwh.2015.5385
Kaiser Family Foundation. (2011, May 1). Kaiser health tracking poll. http://kff.org/health-reform/poll-finding/kaiser-health-tracking-poll-may-2011/
Kaiser Family Foundation. (2018). Medicaid HCBS waiver waiting list enrollment, by target population. https://www.kff.org/health-reform/state-indicator/waiting-lists-for-hcbs-waivers
Kaiser Family Foundation. (2021). Status of state action on the Medicaid expansion decision. https://www.kff.org/health-reform/state-indicator/state-activity-around-expanding-medicaid-under-the-affordable-care act/?currentTimeframe=0&sortModel=%7B%22colId%22:%22Location%22,%22sort%22:%22asc%22%7D
Kavoussi, S. K., Smith, Y. R., Ernst, S. D., & Quint, E. H. (2009) Cervical cancer screening with liquid cytology in women with developmental disabilities. Journal of Women’s Health, 18(1), 115-118. https://doi.org/10.1089/jwh.2008.0795
Kaye, S.H. (2019). Disability-related disparities in access to healthcare before (2008-2010) and after (2015-2017) the Affordable Care Act. American Journal of Public Health, 109(7), 1015-1021. https://ajph.aphapublications.org/doi/full/10.2105/AJPH.2019.305056
Kennedy, J., Wood, E. G., & Friedman, L. (2017). Disparities in insurance coverage, health service use, and access following implementation of the Affordable Care Act: A comparison of disabled and non-disabled working adults. Inquiry: The Journal of Healthcare, Organization, Provision, and Financing, 54, 1-10. https://10.1177/0046958017734031
Khran, G.L., Hammond, L., & Turner, A. (2006). A cascade of disparities: Health and healthcare access for people with intellectual disabilities. Developmental Disabilities Research Reviews, 12(1), 70-82. https://doi.org/10.1002/mrdd.20098
Khran, G.L., Walker D. k., & Correa- De-Araujo, R. (2015). Persons with disabilities as an unrecognized health disparity population. American Journal of Public Health, 105(S2), S198-S206. https://ajph.aphapublications.org/doi/full/10.2105/AJPH.2014.302182
Lagu, T., Delk, C., & Morris, M. A. (2015). Epic Fail: Prenatal care for women with mobility impairment. Journal of Women’s Health, 24(12), 963-965. https://doi.org/10.1089/jwh.2015.5623
Lindner, S., Rowland, R., Spurlock, M., Dorn, S., & Davis, M. (2018). “Canaries in the mine…” the impact of Affordable Care Act implementation on people with disabilities: Evidence from interviews with disability advocates. Disability and Health Journal, 11(1), 86-92. https://doi.org/10.1016/j.dhjo.2017.04.003
Linton, J. M., & Green, A. (2019). Providing care for children in immigrant families. Pediatrics, 144(3). 1-21. https://doi.org/10.1542/peds.2019-2077
Magaña, S., Parish, S. L., Rose, R. A., Timberlake, M., & Swaine, J. G. (2012). Racial and ethnic disparities in quality of healthcare among children with autism and other developmental disabilities. Intellectual and Developmental Disabilities, 50, 287–299. https://doi.org/10.1352/1934-9556-50.4.287
Marrocco, A. & Krouse, H.J. (2017). Obstacles to preventive care for individuals with disability: Implications for nurse practitioners. Journal of the American Association of Nurse Practitioners, 29(5), 282-293. https://doi.org/10.1002/2327-6924.12449
Mitra, M., Clements, K. M., Zhang, J., Iezzoni, L. I., Smeltzer, S. C., & Long-Bellil, L. M. (2015a). Maternal characteristics, pregnancy complications and adverse birth outcomes among women with disabilities. Medical Care, 53(12), 1027-1032. https://doi.org/10.1097/MLR.0000000000000427
Mitra, M., Iezzoni, L. I., Zhang, J., Long-Bellil, L. M., Smeltzer, S. C., & Barton, B. A. (2015b). Prevalence and risk factors for postpartum depression symptoms among women with disabilities. Maternal and Child Health Journal, 19(2), 362-372. https://doi.org/10.1007/s10995-014-1518-8
Mitra, M., Long-Bellil, L. M., Iezzoni, L. I., Smeltzer, S. C., & Smith, L. D. (2016). Pregnancy among women with physical disabilities: Unmet needs and recommendations on navigating pregnancy. Disability and health journal, 9(3), 457-463. https://doi.org/10.1016/j.dhjo.2015.12.007
Mitra, M., Akobirshoev, I., Moring, N. S., Long-Bellil, L., Smeltzer, S. C., Smith, L. D., & Iezzoni, L. I. (2017). Access to and satisfaction with prenatal care among pregnant women with physical disabilities: Findings from a National Survey. Journal of Women’s Health, 26(12), 1356-1363. https://doi.org/10.1089/jwh2016.6297
Montes, G., & Halterman, J. (2011). White–Black disparities in family-centered care among children with autism in the United States: Evidence from the NS-CSHCN 2005–2006. Academic Pediatrics, 11, 297–304. https://doi.org/10.1016/j.acap.2011.02.002
Mosher, W., Bloom, T., Hughes, R., Horton, L., Mojtabai, R., & Alhusen, J. L. (2017). Disparities in receipt of family planning services by disability status: New estimates from the National Survey of Family Growth. Disability and Health Journal, 10(3), 394–399. https://doi.org/10.1016/j.dhjo.2017.03.014
Mulcahy, A., Streed Jr, C. G., Wallisch, A. M., Batza, K., Kurth, N., Hall, J. P., & McMaughan, D. J. (2022). Gender identity, disability, and unmet healthcare needs among disabled people living in the community in the United States. International Journal of Environmental Research and Public Health, 19(5), 2588. 1-19.
National Council on Disability. (2012). Rocking the cradle: Ensuring the rights of parents with disabilities and their children. https://www.ncd.gov/publications/2012/Sep272012. Accessed March 4, 2016.
National Institute on Minority Health and Health Disparities (n.d). Minority health and health disparities: Definitions and parameters. https://www.nimhd.nih.gov/about/strategic-plan/nih-strategic-plan-definitions-and-parameters.html#:~:text=NIH%20defines%20health%20disparity%20populations,or%20more%20of%20these%20descriptions.
Ngui, E. M., & Flores, G. (2007). Unmet needs for specialty, dental, mental, and allied healthcare among children with special healthcare needs: Are there racial/ethnic disparities?. Journal of Healthcare for the Poor and Underserved, 18(5), 931-949. https://doi.org/10.1353/hpu.2007.0102
Office of the Assistant Secretary for Health. (2020). Healthy People 2020: An end of decade snapshot. https://health.gov/our-work/healthy-people/assessing-healthy-people-2020
Olmstead v. L.C. and E.W., 527 U.S. 581 (1999).
Parish, S. L., Rose, R. A., Dababnah, S., Yoo, J., & Cassiman, S. A. (2012). State-level income inequality and family burden of US families raising children with special healthcare needs. Social Science & Medicine, 74(3), 399-407. https://doi.org/10.1016/j.socscimed.2011.10.035
Parish, S.L., Swaine, J.G., Son, E., & Luken, K. (2013a). Receipt of mammography among women with intellectual disabilities: Medical record data indicate substantial disparities for African American women. Disability and Health Journal, 6, 36-42. https://doi.org/10.1016/j.dhjo.2012.08.004
Parish, S.L., Swaine, J.G., Son, E., & Luken, K. (2013b). Determinants of cervical cancer screening among women with intellectual disabilities: Evidence from medical records. Public Health Reports, 128(6), 519-526. https://doi.org/10.1177/003335491312800611
Parish, S. L., Magana, S., Swaine, J. G., & Son, E. (2013c). Studying racial and ethnic healthcare disparities among children with intellectual and developmental disabilities using the National Survey of Children with Special Healthcare Needs. In International Review of Research in Developmental Disabilities (Vol. 45, pp. 185-224). Academic Press.
Parish, S.L., Mitra M., Son, E., Bonardi, A., Swoboda, P., & Igdalsky, L. (2015). Pregnancy outcomes among US women with intellectual disabilities. American Journal on Intellectual and Developmental Disabilities, 120(5), 433-443. https://doi.org/10.1352/1944-7558-120.5.433
Pollack, H., Johnston, K., & Wen, H. (2021, July 22). Americans with disabilities are a health disparity population that deserves greater attention and resources. Milbank Quarterly Opinion. https://doi.org/10.1599/mqop.2021.0722
Powell, Mitra, M., Smeltzer, S. C., Long-Bellil, L. M., Smith, L. D., & Iezzoni, L. I. (2017). Family Attitudes and Reactions toward Pregnancy among Women with Physical Disabilities. Women’s Health Issues, 27(3), 345–350. https://doi.org/10.1016/j.whi.2017.01.003
Rosen-Reynoso, M., Porche, M. V., Kwan, N., Bethell, C., Thomas, V., Robertson, J., … & Palfrey, J. (2016). Disparities in access to easy-to-use services for children with special healthcare needs. Maternal and Child Health Journal, 20(5), 1041-1053. https://doi.org/10.1007/s10995-015-1890-z
Rugoho, T., & Maphosa, F. (2017). Challenges faced by women with disabilities in accessing sexual and reproductive health in Zimbabwe: The case of Chitungwiza town. African Journal of Disability, 6, 1-8. https://doi.org/10.4102/ajod.v6i0.252
Silvers, A., Francis, L. P., & Badesch, B. (2016). Reproductive rights and access to reproductive services for women with disabilities. American Medical Association Journal of Ethics, 18(4), 430-437. http://dx.doi.org/10.2139/ssrn.2791656
Singh, G. K., & Lin, S. C. (2013). Marked ethnic, nativity, and socioeconomic disparities in disability and health insurance among US children and adults: the 2008–2010 American Community Survey. BioMed Research International, 1-17. https://doi.org/10.1155/2013/627412
Smeltzer, S. C., Sharts-Hopko, N. C., Ott, B. B., Zimmerman, V., & Duffin, J. (2007). Perspectives of women with disabilities on reaching those who are hard to reach. Journal of Neuroscience Nursing, 39(3), 163-171. https://doi.org/10.1097/01376517-200706000-00007
Son, E., Moring, N.S., Igdalsky, L., & Parish, S.L. (2018). Navigating the healthcare system in community: Perspectives from Asian immigrant parents of children with special healthcare needs. Journal of Child Healthcare, 22(2), 251–268. https://doi.org/10.1177/1367493517753084
Son, E., Igdalsky, L., & Parish, S.L. (2017). Disparities in healthcare quality among Asian children with special healthcare needs. Health & Social Work, 42(2), 95-102. https://doi.org/10.1093/hsw/hlx004
Swaine, J.G., Parish, S.L., Luken, K., Son, E., & Dickens, P. (2014). Test of an intervention to improve knowledge of women with intellectual disabilities about cervical and breast cancer screening. Journal of Intellectual Disability Research, 58(7), 651-663. https://doi.org/10.1111/jir.12062
Tarasoff. (2017). “We don’t know. We’ve never had anybody like you before”: Barriers to perinatal care for women with physical disabilities. Disability and Health Journal, 10(3), 426–433. https://doi.org/10.1016/j.dhjo.2017.03.017
Treacy, A. C., Taylor, S. S., & Abernathy, T. V. (2018). Sexual health education for individuals with disabilities: A call to action. American Journal of Sexuality Education, 13(1), 65-93. https://doi.org/10.1080/15546128.2017.1399492
Ulrich, M., (2014, November 18). Challenges for people with disabilities within the healthcare safety net. https://doi.org/10.1377/hblog20141118.042813
United Nations. (2007). Article 25 of the UN Convention on the Rights of Persons with Disabilities (CRPD). https://www.un.org/development/desa/disabilities/convention-on-the-rights-of-persons-with-disabilities/article-25-health.html
US Department of Health and Human Services. (2021), Healthy people 2030. https://health.gov/healthypeople/objectives-and-data/browse-objectives/people-disabilities/reduce-proportion-adults-disabilities-who-delay-preventive-care-because-cost-dh-01
Velott, D. L., Agbese, E., Mandell, D., Stein, B. D., Dick, A. W., Yu, H., & Leslie, D. L. (2016). Medicaid 1915(c) Home-and Community-Based Services waivers for children with autism spectrum disorder. Autism, 20(4), 473–482. https://doi.org/10.1177/1362361315590806
Wilkenfeld, B., & Ballan, M. S. (2011). Educators’ attitudes and beliefs towards the sexuality of individuals with developmental disabilities. Sexuality and Disability, 29(4), 351–361. doi:10.1007/s11195-011-9211-y
Wisdom, J., McGee, M., Horner-Johnson, W., Michael, Y., Adams, E., & Berlin, M. (2010). Health disparities between women with and without disabilities: A review of the research. Social Work in Public Health, 25(3/4), 368-386. https://doi.org/10.1080/19371910903240969
World Health Organization (WHO). (2020, December 1). Disability and health. https://www.who.int/news-room/fact-sheets/detail/disability-and-health
Zuccaro, M. V., Xu, J., Mitchell, C., Marin, D., Zimmerman, R., Rana, B., … & Egli, D. (2020). Allele-specific chromosome removal after Cas9 cleavage in human embryos. Cell, 183(6), 1650-1664.