An African proverb, “It takes a village to raise a child,” recognizes the reality that parents, whether or not they have a disability, cannot and should not parent alone. Indeed, parents without disabilities rely on a variety of formal and informal supports to help them with their child-rearing responsibilities. Lightfoot and LaLiberte say, “Formal supports that are typically used among North American parents include paid daycare, housecleaning, paid tutoring, or even take-out restaurants. Typical informal supports include grandparents providing a night out for parents (respite care), neighbors shoveling snow off the driveway of a new parent (chore services), or parents joining together for carpooling to soccer practice (transportation services).” Parents with disabilities must have similar supports available to them and their families.
Lisa, who has cerebral palsy and is a mother of two daughters, says, “When parenting with a disability, I think it’s important to embrace the fact that we are all interdependent and we each have different skills to contribute in raising happy, healthy children…. It’s that interdependence with other people that is so essential in raising children. Everyone has different skills, but we share what we can give.”
Supporting parents with disabilities and their families in the community is not only the right thing to do, it is legally mandated. In the 1999 case Olmstead v. L.C. ex rel. Zimring, the Supreme Court recognized the importance of community integration of people with disabilities. In this landmark case, the Court held that unnecessary segregation of people with disabilities violated the ADA. The Olmstead decision sparked a national effort to maximize community placement and integration of people with disabilities. Susan Stefan, disability attorney, says, “Family integration is not only a natural corollary to community integration, it is a fundamental component of community integration.” Accordingly, all supports for parents with disabilities and their families must be community-based.
Appropriate supports are crucial to the lives of many parents with disabilities and their children. Lindsay, a mother with physical disabilities and a traumatic brain injury, affirms the significance of services: “Given my lack of trust in ‘the system’ and sparse community support resources, I cannot be both a full-time parent and a good parent. I share custody with my ex but only spend weekends with my kids. With proper support, I know I could be a good, full-time parent.”
This chapter explores various supports that must be available to parents with disabilities and their families. Many of the supports discussed here already exist and need only be expanded or modified to better serve parents with disabilities and their families; others must be established. If these families receive the proper supports, most will undoubtedly thrive.
Personal Assistance Services
Personal assistance services (PAS) are a crucial support for more than 13.2 million people with disabilities. PAS help people with activities of daily living (ADLs), such as eating, bathing, dressing, and toileting, as well as with instrumental activities of daily living (IADLs), such as grocery shopping, cooking, and cleaning. PAS typically fall into two categories: informal (unpaid) services provided by family members, friends, or neighbors; and formal services that are typically paid by public funding, private insurance, or out of pocket.
PAS have the potential to be of great help to parents with disabilities and their families. In a national survey of 1,200 parents with disabilities conducted for TLG by Linda Barker and Vida Maralami, nearly four-fifths (79 percent) reported a need for some type of personal assistance, and more than half (57 percent) reported needing help with parenting tasks. This survey revealed that parents with various disabilities would benefit from PAS: Approximately 60 percent of parents with psychiatric or physical disabilities reported that they would benefit from assistance with parenting activities, and approximately 50 percent of those with sensory or developmental disabilities said they would benefit.
According to this survey, parents with disabilities need assistance with a variety of parenting tasks. They need the most help enjoying recreational activities with their children (43 percent). Forty percent reported needing assistance with “chasing and retrieving their children” and 40 percent reported needing assistance with traveling outside their home. Other areas in which parents reported needing assistance were lifting/carrying children, organizing supplies/clothing, disciplining children, playing with children, bathing children, childproofing the home, and advocating for children.
Cost is the most significant barrier for parents with disabilities who need PAS to help them with parenting activities. Pursuant to the Social Security Act, states may elect, as an optional benefit, to provide personal care services. According to the Centers for Medicare and Medicaid Services State Medicaid Manual:
“Personal care services (also known in States by other names such as personal attendant services, personal assistance services, or attendant care services, etc.) covered under a state’s program may include a range of human assistance provided to persons with disabilities and chronic conditions of all ages which enable them to accomplish tasks that they would normally do for themselves if they did not have a disability. Assistance may be in the form of hands-on assistance (actually performing a personal care task for a person) or cuing so that the person performs the task by him/herself. Such assistance most often relates to performance of ADLs and IADLs. ADLs include eating, bathing, dressing, toileting, transferring, and maintaining continence. IADLs capture more complex life activities and include personal hygiene, light housework, laundry, meal preparation, transportation, grocery shopping, using the telephone, medication management, and money management. Personal care services can be provided on a continuing basis or on episodic occasions.”
Government-funded PAS do not allow attendants who are assisting parents with disabilities to also care for their nondisabled children, which creates a significant challenge for these parents. According to the survey, only 10 percent of respondents who needed parenting help used government-funded PAS for parenting tasks. The rest of the respondents reported finding other ways to address this need. The most common solution, reported by 68 percent of parents, was to get unpaid help from family or friends, although 43 percent reported paying for extra assistance out of pocket. Equally troublesome—and a clear sign of their devotion to their children—35 percent of parents reported going without some personal care or household help they needed for themselves. Finally, 19 percent of the parents reported that they felt unable to provide their children with all the care they needed.
Other Western nations do not have this problem. In Canada, for example, a parent who requires personal care is also eligible for services that will help with child care tasks. The service providers who help with such tasks are called nurturing assistants. However, not all disabilities entitle an individual to personal care, and lack of information regarding this service can be a barrier for parents. In Sweden, the right to personal care is based on function, so access to care is not limited by diagnosis. Once qualified, people with disabilities may use their personal care hours for whatever tasks they require, including child care. Personal care is mainly for parents with physical disabilities, although parents with intellectual disabilities may use it as well. The debate in Sweden is not over the right to parenting support services; rather, attachment theory has triggered a discussion about the impact of third party caretaking on children.
PAS have potential to greatly assist parents with their disabilities and their families, and the benefits of PAS go beyond improving quality of life—they have been found to be cost-effective, too. Several states have conducted small pilot projects in which foster care money is put toward well-coordinated aid to parents in crisis—because of substance abuse, disabilities, or other challenges—in hopes of keeping their children out of the foster care system. Santa Clara, one of the first California counties to try the new approach, calculated that for every dollar it spent on the intensive program, it saved $1.72 in federal, state, and county funds earmarked for foster care, not counting court costs involved in arranging foster care. Adaptive parenting equipment and home modification can also prove cost-effective by reducing the need for PAS hours.
The importance of PAS for parenting was emphasized by several of the parents who spoke to NCD. Rachel, a widowed mother and wheelchair user with a physical disability, often uses PAS to assist her in parenting. Although she acknowledges that she is not supposed to, she has her attendant help with parenting activities such as meal preparation, transporting her daughter, recreation activities, and being available if her daughter has a behavioral incident. Rachel, who is on a limited income, pays her attendant extra for this assistance and wishes Medicaid allowed PAS hours to be used for parenting. Christina, a single mother of three children, all of whom also have disabilities, uses PAS to help her with parenting activities. Christina is a wheelchair user with significant physical and sensory (visual and hearing) disabilities. She has consumer-directed attendant services, which she uses to care for her whole family. She is on a very limited income and pays out of pocket for some of these services. Like Rachel, Christina wishes PAS were available to assist in parenting; she wants Medicaid to add parenting to these services. Jessica has also used PAS to help her with parenting activities. She is a wheelchair user and has a physical disability; her husband is a little person. When their twins were newborns, Jessica hired an assistant to help her care for her children, which she and her husband paid for out of pocket. She, too, wishes PAS covered parenting. Other parents also reported using PAS to assist them; many of them forgo their own care so the assistance can help with parenting.
Some parents with disabilities expressed the need for PAS to assist them with parenting on an intermittent basis—something like respite care. Susan, a mother of two children, wishes intermittent PAS were available to provide respite during the episodic illnesses she experiences owing to her disability (immune system disorder). Lindsay, a mother of two children, reported needing PAS but not being able to get them. Lindsay has a physical disability and an acquired brain injury. She wishes PAS could help her with tasks such as reminding her to take her medication and taking her children out when she feels “sad.” Ora Prilletensky, in her article “A Ramp to Motherhood: The Experiences of Mothers with Physical Disabilities,” noted that in a recent study she had conducted, one mother reported that when her children were younger, she was often hospitalized. With no one to care for them during the regular hospitalizations, she was forced to turn to child welfare. Reintegration was always challenging, and her children lacked consistency.
PAS are important for many parents with disabilities. This critical support can either make or break a family. So, why are services funded only if the child also has a disability? To address this significant need, CMS must expand its definition of ADLs to include parenting activities, so that funded PAS can be used to help consumers with their parenting responsibilities.
Having a home is crucial to creating and maintaining a family. However, securing accessible, affordable, and appropriate housing is a significant barrier for people with disabilities. In fact, it is nearly impossible for people with disabilities living on Supplemental Security Income (SSI) to obtain decent, safe, affordable, and accessible housing in the community without a permanent housing subsidy. Workers must earn $15 an hour over a 40-hour work week to afford a one-bedroom rental at the national average. This means that people with disabilities who receive SSI would have to triple their income to afford housing. A recent government report estimated that at least 43 percent of homeless adults in shelters—approximately 421,000 people—identify as people with a disability. The unique needs of parents with disabilities and their families further compound the challenges of securing accessible, affordable, and appropriate housing.
The Barker-Maralami survey mentioned earlier, of 1,200 parents with disabilities, revealed several significant housing barriers experienced by these parents and their
families. Forty-three percent of the parents who responded identified at least one problem in finding appropriate housing for their families. And when researchers reviewed the responses to other questions in the survey, they found even more reports that housing was an issue: Nearly two-thirds (64 percent) of the respondents mentioned some kind of challenge related to finding appropriate housing.
Parents with disabilities experience a variety of difficulties in securing housing appropriate for raising a family. In addition, a third of parents with disabilities responded that housing was too expensive, and more than a quarter reported that housing lacked sufficient space (especially storage space) and had rooms that were too small to accommodate their physical needs. One-quarter reported difficulty finding housing that was accessible, and many others reported that housing was poorly suited to families with children—too few rooms, lack of safe outdoor play areas, or located on busy streets with traffic. Twenty-five percent of the parents said that accessible housing does not accommodate children. It appears that housing developers and housing program administrators lack awareness that people with disabilities are not all single, living alone, with an attendant or a roommate. For some parents, the need for physical access limits the availability of appropriate family housing.
Because accessible housing often does not accommodate children and housing designed for families often does not provide the accessibility features that many parents with disabilities need, most parents (60 percent) reported having to make modifications to their housing so that it better met their needs. The cost to make necessary housing modifications is a significant barrier for many parents with disabilities and their families. Since very limited—if any—public assistance is available for modifying housing, 84 percent of parents reported having had to pay for the modifications themselves. Nearly 60 percent reported that they were unable complete some housing modifications owing to lack of funds. Barker and Maralami concluded, “Given the lack of accessible housing that is appropriate for raising families, and the lack of sufficient income to pay for housing changes, many families simply have to do without many of the housing features that they feel are necessary or would make their lives easier.”
In light of the range of housing barriers and the scarce resources available to pay for home modifications, it is not surprising that fully a third of the survey respondents articulated specific building changes that would be useful to them for parenting. Although wheelchair access was a key issue for many parents with disabilities, the biggest unmet need reported was space. More than half of the parents said that larger or more rooms would help them in parenting. Providers of baby care adaptations have found that limited space is a common barrier to installing appropriate equipment in homes. Barker and Maralami write, “The other changes that would help are all associated in one way or another to physical barriers. Many of these would be barriers regardless of whether the respondents were raising children. However, it is important to note that many families find themselves in housing arrangements that are inaccessible because the housing that is built to be accessible to individuals with physical disabilities does not accommodate families with children. Also, access to outdoor play areas at home is a particularly important issue for disabled people who are raising children because of the added transportation and logistical difficulties of taking children to a park or recreation program for outdoor play.”
Home is of great importance for most families—a place of cherished memories, warmth, and comfort. But for many parents with disabilities and their families, home is more likely to mean inaccessibility and unaffordability. For parents with disabilities, the lack of affordable accessible housing frequently affects child custody. A significant increase in affordable, accessible, and integrated housing is required for parents with disabilities and their families, as well as increased funding for home modifications. Specifically, HUD must require public housing authorities to have at least 50 percent of their accessible units in family housing developments. Such units must comply with all relevant federal disability access requirements and must include the same family-oriented space and appointments found in other units. HUD should develop a national modification fund to pay for reasonable modifications that are necessary to make private units accessible for parents with disabilities and their families. HUD should also develop a program for parents with disabilities who are first-time homeowners.
Having appropriate and accessible transportation is critical for parents with disabilities and their families, but research demonstrates that people with disabilities are more likely than people without disabilities to report that they have inadequate transportation: 34 percent versus 16 percent, respectively—a gap of 18 percent. The realities behind these statistics reveal lives severely limited by the lack of transportation options. Some people with disabilities who would otherwise be able to work cannot do so because of inadequate transportation. Others cannot shop, socialize, go to religious services, or even leave their homes. Some people with disabilities who need medical services are confined to institutions solely because of the lack of safe, reliable transportation options to get them to these services. For parents with disabilities and their families, transportation remains a significant barrier.
Transportation affects all areas of the lives of parents with disabilities and their families—from child care to housing to participating in a child’s education to accessing a child’s medical care. It was the barrier encountered by the largest number of parents in the aforementioned national survey: 79 percent of survey respondents identified transportation as a barrier at least once in the survey.
Not surprisingly, the majority of respondents with physical or sensory (mostly visual) disabilities identified transportation as an issue. However, it was also raised as a significant concern by parents with other disabilities. As the study revealed, although parents with physical or sensory disabilities are the most likely to report transportation problems, more than half of parents with psychiatric or intellectual disabilities also reported problems with transportation.
Parents with disabilities use a variety of modes of transportation. Interestingly, the survey found that parents whose primary disability is physical are more likely to use their own car or van than parents whose primary disability is not physical (85 percent versus 64 percent). Surveyors speculate that this may be due in part to limited accessible public transportation in many parts of the country. Far fewer parents with physical disabilities reported using public transportation than parents with other disabilities (13 percent versus 33 percent). The survey found that parents with sensory disabilities were much more likely to use “other” forms of transportation than parents with other disabilities; these included family and friends, taxis, and walking.
The study further noted that many parents with disabilities used paratransit services, with little variation by on disability. Unfortunately, paratransit comes with its own set of barriers. A national study conducted by TLG that is near completion was prompted by recommendations of the Bay Area Parents with Disabilities and Deaf Parents Task Force in 2006. The study followed years of parent complaints and confusion about policies that affected their ability to use paratransit to travel with their young children. Critical concerns for parents were policies stating that only one companion could accompany a parent on a ride; lack of driver assistance with carrying and installing car seats; inability to store car seats on paratransit vehicles; and not being able to schedule chain trips in which the paratransit driver waits for the parent during day care or school drop-offs. Preliminary data analyses from the national study show that although paratransit agencies vary in their policies and practices, a majority responded that they currently cannot guarantee space for more than one child companion; do not assist with car seat installation; do not carry car seats from a location beyond the curb; do not allow parents to store car seats on paratransit vehicles; and do not allow for 10-minute “scheduled waits” for parents to drop off their children. An additional barrier for parents in using paratransit is the high cost: Agencies are authorized to charge parents and their children twice the price of the fixed-route fare. Although individual agencies may try to accommodate the needs of parents by ensuring that entire families can ride together and providing assistance beyond what is required with carrying and installing car seats, these practices need to be codified so that receipt of the services does not depend on the goodwill of drivers but is mandated by paratransit policy. The current lack of assistance parents receive from drivers when using paratransit and the significant cost of travel can make paratransit difficult, if not impossible, for parents traveling with their children.
The Department of Transportation’s Federal Transit Administration (FTA) has issued only one Letter of Finding to a parent who was denied the right to bring her child on paratransit. While the finding was for the parent, noting that assistance in loading the child safety seat and allowing the child was required for her to access the service, Letters of Finding are not precedential in nature according to the FTA, although they may be helpful to others who are dealing with the same issue involving similar facts.
Appropriate and accessible transportation is crucial to the lives of parents with disabilities and their families. Nevertheless, it remains one of the most challenging areas for many parents with disabilities and their families. To adequately support these families, significant attention must be given to improving transportation. The Department of Transportation must issue guidance to paratransit providers on their legal obligations to transport parents with disabilities and their families to support the successful execution of parenting and employment roles by people with disabilities.
Public Benefits and Poverty
The financial status of people with disabilities is bleak: Since 1981, the income gap between households with and without a person with a work limitation (the Current Population Survey definition of disability) has grown steadily, from a difference of about $19,000 in 1980 (in 2008 dollars) to nearly $28,000 in 2008. Median earnings for people with disabilities dropped 7 percent from 2008 to 2009, 2 percent more than the drop for persons without disabilities (5 percent). Further, the number of people with disabilities who live in poverty is three times the number of people without disabilities. Parents with disabilities and their families are not protected from this harsh reality. In fact, the most significant difference between parents with disabilities and parents without disabilities is economic: The median family income for parents with disabilities is $35,000, compared with $65,000 for parents without disabilities. Research also indicates that more parents with disabilities are unemployed (48 percent versus 22 percent).
Parents with disabilities are more likely than parents without disabilities to receive public benefits. A recent survey revealed that 52 percent of parents with disabilities receive SSI. Specific data are limited regarding other public benefits parents with disabilities and their families receive; however, in 2010, 3.6 million households (20 percent of all households) with a person with a disability received SNAP each month. Presumably many of those households included parents with disabilities. And it is likely that a substantial number of parents with disabilities and their families receive Social Security Disability Insurance (SSDI), Medicaid, and Medicare.
Advocates and researchers have focused some attention on Temporary Assistance for Needy Families (TANF), which research suggests a significant number of people with disabilities receive (presumably many are parents with disabilities). TANF was created through the Personal Responsibility and Work Opportunity Reconciliation Act of 1996 (PRWORA); it provides a small monthly cash benefit to low-income families. Pursuant to PRWORA, parents who receive TANF must work a certain number of hours (determined by the age of their children). PRWORA also imposed a five-year lifetime limit on assistance. Advocates and researchers contend that these rules disproportionately affect parents with disabilities, particularly parents with psychiatric or intellectual and developmental disabilities, a group that includes a substantial portion of TANF recipients. Without appropriate family and work supports to overcome barriers to employment, parents with disabilities, especially single mothers, may be unable to comply with the PRWORA/TANF regulations, resulting in a loss of benefits to their families. Advocates say that the work requirements do not specifically consider disabilities as a barrier to work. In addition, low-paying work and lack of job training programs for people with disabilities are common obstacles to employment, and people with disabilities still face significant discrimination in the hiring process, further hindering their ability to comply with the work requirements. Finally, some parents with disabilities may need long-term employment support, such as career planning and training.
The financial status of parents with disabilities and their families is particularly significant, because they often have additional expenses connected to their disability (e.g., medication, adaptive equipment, transportation, and housing modifications). Parents with disabilities also often have additional expenses for assistance in caring for their children (e.g., specialized transportation or PAS). According to the TLG report Visible, Diverse, and United: A Report of the Bay Area Parents with Disabilities and Deaf Parents Task Force, “The working poor and even those families of medium income might not qualify for financial assistance or for certain types of services because their family income disqualifies them for services (e.g., free school lunches). Yet, these families often cannot afford services, equipment, etc., without reduced fees or sliding scale because of extra out-of-pocket disability expenses.”
Many parents with disabilities expressed frustration with the system. According to Rachel, a disabled mother with one child, the biggest barrier is that “the system keeps people with disabilities poor.” She pointed out that parents with disabilities who receive SSI benefits get no additional SSI monies if they have children. Rachel believes that “a kid in poverty is going to have problems.”
Unfortunately, states are taking drastic actions that further undermine parents with disabilities and their children. Recently, New Hampshire has begun counting SSI income in calculating household income to determine welfare eligibility. Nearly 1,200 families will lose this aid and another 420 will have their benefits greatly reduced. Idaho is the only other state to do this. Other states—such as Minnesota, West Virginia, and North Carolina—have tried or considered counting SSI.
Research demonstrates that parents with disabilities and their families have a substantial likelihood of living in poverty, and they depend heavily on public benefits.
Public benefits must be appropriate and accessible for these families. SSA must begin an exploratory project to determine how to better serve SSI and SSDI beneficiaries, focusing on ways to increase financial assistance to parents with disabilities and their families. NCD recommends that the HHS ACF provide additional supports to parents with disabilities who receive TANF, including job training, child care, and transportation. State vocational rehabilitation agencies also must assist parents with disabilities who receive TANF.
Proper health care, especially reproductive health care, is crucial for people who want to create and maintain families, but women with disabilities face significant barriers to receiving accessible, affordable, and appropriate health care.
The health care profession has a long-standing history of curtailing the reproductive rights of people with disabilities. While the eugenics movement is considered a thing of the past, many health care providers hold on to stereotypes about people with disabilities and their sexuality. According to Carrie Killoran, a mother with a disability, “Whether a woman is born with a disability or acquires it later in life, the message she gets from the medical system and society is that she is ineligible for normal societal female roles of lover, wife, or mother.”
Studies have consistently demonstrated that the attitudes of physicians and other health care professionals toward people with disabilities are as negative, if not more negative, than those of the general public. One study found that “health professionals significantly underestimate the quality of life of people with disabilities compared with the actual assessments made by people with disabilities themselves. In fact, the gap between health professionals and people with disabilities in evaluating life with disability is consistent and stunning.” For instance, “In a survey study of attitudes of 153 emergency care providers, only 18 percent of physicians, nurses, and technicians imagined they would be glad to be alive with a severe spinal cord injury. In contrast, 92 percent of a comparison group of 128 persons with high-level spinal cord injuries said they were glad to be alive.”
The misconceptions and negative attitudes held by many health care professionals about people with disabilities and reproduction have significant and detrimental effects on the health of these people. According to Michael Stein, an international disability expert, because of the “nonsexuality myth” harbored by many health care professionals about people with disabilities, women with disabilities often receive inadequate and inaccessible health care. “The prevailing presumption is that if women with disabilities will not or cannot engage in sexual activity, then they do not need access to gynecological health care.” For example, people with disabilities are almost never considered to be in need of information about HIV and treatment for it. As a result, although people with disabilities are nearly as likely to be sexually active as people without disabilities, their HIV infection rate is up to three times higher. Similarly, women with disabilities are less likely to receive information on contraception. One study found that only 19 percent of women with physical disabilities received sexuality counseling.
Women with disabilities are often coerced into terminating their pregnancies, as well as being strongly discouraged from ever becoming pregnant. For instance, Rachel, an adoptive mother with physical disabilities, was told by a nurse in 1994 never to have children because they would have disabilities, although her disability is not inheritable. This encounter left Rachel “forever over medical personnel.” Similarly, Susan, now a mother of two children, was told at age 17 never to have children because of her disability (an immune system disorder).
When women with disabilities are provided with reproductive health care services, it is often sterilization. The literature suggests that women with disabilities “are more likely to have hysterectom[ies] at a younger age than are women without disabilities, and more likely than their able-bodied counterparts to have a hysterectomy for non-medically necessary reasons, such as birth control, personal convenience, or at the request of a parent or guardian.” Women’s accounts suggest that the idea of having a hysterectomy often comes from health care providers, not the woman herself. A study conducted by the Center for Research on Women with Disabilities at Baylor College of Medicine reported that women with physical disabilities had a higher rate of hysterectomy (22 percent versus 12 percent for those without disabilities) and were more likely to have this procedure done at a younger age.
Moreover, women with disabilities often encounter pressure from doctors and society to abort a pregnancy because of the possibility of passing on disabilities to their children—even if the disability is not inheritable. During Lindsay’s first pregnancy, her doctor assumed that because of her disability (which at the time was only physical) she was “high-risk” and encouraged her to have an abortion. After that encounter, she transferred her care to midwives, whom she reports were very supportive.
Further, although the Rehabilitation Act and the ADA require that health care programs, institutions, and offices offer physical and programmatic accessibility, very few are fully accessible. Structural barriers to receiving adequate and informed reproductive care include limited professional training and competency of primary care and reproductive care specialists; inadequate or no health insurance coverage for visits to specialists; poor physical access to usable and adapted or specialized examination and diagnostic equipment; and negative or discriminatory provider attitudes.
According to one qualitative study, health care providers sometimes expressed surprise that women with disabilities would be sexually active. As a result, they frequently did not discuss the use of contraceptives or evaluate the women for STDs. Some women with disabilities report that they avoid regular visits to the gynecologist because services are so difficult to obtain. One study reported that a gynecologist caring for a woman who uses a wheelchair assumed she was not sexually active and, therefore, saw no need to test for STDs. Further, research shows that women with disabilities are less likely to receive pelvic examinations, including a Pap test, although these tests are considered routine care for adult women.
Women with disabilities often face significant barriers to receiving proper prenatal care as well as access during the delivery of their children. Cassandra, a wheelchair user with significant physical disabilities, reported receiving improper prenatal care, including not being weighed during her entire pregnancy because her doctor did not have an accessible scale, and not receiving proper examinations because no one in her doctor’s office would help her transfer from her wheelchair to the examination table. She also faced attitudinal barriers. For example, on learning that she was pregnant, her doctor said, “How did that happen?” Cassandra was also referred to a physical therapist to assess her ability to parent. As a result of these experiences, she believes that the core of the problems many parents with disabilities face is with the medical community. She wishes health care professionals had training to understand disability. Samantha, a mother of one child, also encountered significant physical barriers to proper health care during her pregnancy. At 31 weeks and again while she was in labor, she was unable to transfer from her wheelchair to the gurney because the gurney did not go low enough. Women with disabilities also face programmatic barriers to receiving proper health care. Danielle, a mother of three children, reported to NCD that her doctors and the hospital at which she delivered would not provide sign language interpreters for her.
Many of the barriers people with disabilities face when receiving health care are a result of health care professionals not fully understanding how to care for this community. For instance, many women with disabilities are encouraged to have a cesarean section “simply because of anxiety on the provider’s part.” As the risk and rate of cesarean sections are known to be excessively high, this ongoing policy of recommending the procedure unnecessarily for women with disabilities is especially troubling. In The Disabled Woman’s Guide to Pregnancy and Birth, based on interviews with 90 women with physical disabilities, Judith Rogers, a mother of two who has cerebral palsy, devotes an entire chapter to exploring the assumptions that can lead to recommendations of unnecessary cesarean deliveries for mothers with disabilities. She also covers the decision to have a baby; parenting with a disability; emotional concerns of the mother, family, and friends; nutrition and exercise in pregnancy; a look at each trimester; labor and delivery; the postpartum period; and breast-feeding. She notes,
“My husband and my daughter are both doctors. And in the 30 years between their medical school experiences, nothing has been added regarding disability.” She sums up the attitudinal bias this way: “The medical community sees us and thinks, ‘If it doesn’t work on the outside, how can it work on the inside?’”
In the same vein as the assumptions regarding the need to rely on cesarean delivery for women with disabilities, many women with disabilities are unnecessarily referred to high-risk pregnancy specialists. According to one expectant mother with a disability, when she visited the specialist her physician had referred her to, she was told that her pregnancy was not high-risk but that many providers make that assumption if the mother has a disability. The specialist said, “You’re probably the least high-risk woman to come into my practice, but you make providers nervous because you’re not in their textbooks.”
Health care professionals must not only comply with their legal obligations to be fully accessible but must also provide reasonable accommodations. For example, an accommodation for a pregnant woman who is blind or has low vision, or a woman with intellectual disabilities, might be a private tour of birthing facilities. For women who are deaf or hard of hearing, appropriate accommodations might be to identify the interpreter before delivery or to meet with labor and delivery staff and discuss the best ways to communicate (e.g., transparent masks for lip reading).
In addition to structural and programmatic accessibility barriers, many women with disabilities do not receive appropriate preconception care because of financial barriers. According to the CDC, preconception care is “a critical component of health care for women of reproductive age.” In a Kaiser Foundation study, Usha Ranji and Alina Salganicoff write, “The goals of preconception care are (1) to promote and improve the health of women of reproductive age prior to conception, and (2) to improve pregnancy-related outcomes. Preconception care not only improves the health of a woman prior to pregnancy but also optimizes the health of the fetus during pregnancy.” Despite the importance of preconception care, Medicaid (the largest health insurer of people with disabilities) does not recognize it as a defined category of covered care. In fact, a recent survey revealed that although state Medicaid programs generally cover contraceptives, most do not provide any further preconception care. Kathryn, a wheelchair user and little person, was stunned to learn from her physician, a few months before she became pregnant, that Medicaid would not pay for a pre-pregnancy consultation.
Accessible, appropriate, and affordable health care, particularly reproductive health care, is crucial to the well-being of parents with disabilities and their families. However, for most it remains largely inaccessible and inappropriate. The Agency for Healthcare Research and Quality (AHRQ), under its mandate to undertake research on priority populations, should promote research that clearly identifies the barriers encountered by women with disabilities when they seek reproductive health care. The Association of American Medical Colleges (AAMC) and the Liaison Committee on Medical Education (LCME) should convene a workgroup to identify specific disability competencies that should be required of health care professionals before graduation from medical and residency training programs, and should translate these competencies into specific course recommendations that can be adopted by medical training programs. Further, DOJ must increase its monitoring and enforcement of the ADA and Section 504 of the Rehabilitation Act for health care facilities and programs. Finally, CMS must identify and implement mechanisms to pay for comprehensive preconception care for Medicaid and Medicare beneficiaries with disabilities.
Most parents and prospective parents rely heavily on their peer support network. Peer support provides the opportunity to exchange ideas and experiences with others who are facing similar situations. Peer supports also provide parenting role models.
The importance of peer supports for parents and prospective parents with disabilities may be even greater because of the limited information available on parenting with a disability. As one expectant mother with a disability said, “Perhaps what I have found the most helpful during my pregnancy has been the advice and input from other women with disabilities who have ‘been there, done that.’ I am fortunate to call many women with disabilities my colleagues and friends, and pregnancy has been a special time for me to reach out to those who are also mothers. Speaking with mothers with disabilities has helped me gain perspective on the experience of pregnancy. Even though physically our experiences are different, other women with disabilities have faced the same societal and attitudinal barriers that I am currently dealing with.” Nearly all the parents who spoke with NCD mentioned the importance of peer supports, often noting that peers were more supportive than their families of their quest to become parents.
Most parents, and people who are considering becoming parents, do not have to look far to find positive role models. However, parents and potential parents with disabilities do not have the same opportunities. Researchers have found that parents who are blind or have low vision often try to parent according to “sighted ways of functioning” when they do not have role models with similar disabilities. According to one mother, “The kind of support one can get from other mothers with visual impairments is not available …in the sighted community.” Research has found that parents with intellectual disabilities tend to be isolated and to have limited social networks.
Some disability organizations and have begun to create networks for parents with disabilities. For example, deaf parents are included in forums and presentations on families at national and worldwide organizations for people who are deaf or hard of hearing, including the World Federation of the Deaf, the National Association of the Deaf, Deaf Seniors of America, and Deaf Way. Similarly, in 2000, the Committee on Parental Concerns and the National Federation of the Blind announced dual sponsorship of a blind parent mailing list that creates a forum for blind parents to share their experiences and offer peer-based support and information. The National Multiple Sclerosis Society provides parenting information for its consumers. TLG has developed a national parent-to-parent network as part of its national centers for parents with disabilities. The organization has also facilitated peer support groups for parents with diverse disabilities for 30 years. Although some communities have found it difficult to establish groups for parents with intellectual disabilities, a particularly successful group established 11 years ago has led to the design of a training module—Designing Support Groups for Parents with Intellectual Disabilities—to support replication elsewhere.
Peer-professional staffing in programs that serve parents with disabilities—such as the programs at TLG—is an important vehicle for conveying the wisdom of peers and providing role models. Publications by parents with disabilities, including publications by parents who compile input from other parents, are another such vehicle.
Throughout the world, families headed by parents with intellectual disabilities tend to be less affluent and more isolated. As a result, the community connections and discretionary income necessary to create memory-making family trips, outings, and recreation are often limited or nonexistent. This situation has an effect on the quality of family life. Hanna Björg Sigurjónsdóttir of the University of Iceland designed and recently concluded a three-year project that funded the creation of family peer groups facilitated by professionals in the community. Sigurjónsdóttir summarized the project as follows: “The groups engaged in family days and weekends, the aim of which was for parents and children to get to know each other across families and for family members within each family to enjoy each other’s company, have fun together, and build up collective memories. The project is responsive to the families’ needs and makes it possible to focus on issues that they are dealing with currently in their lives as parents. The year culminated with a community family snow trip that provided a chance for activities, celebration, and fun. The parents and children were also able to invite members of their extended families or close family friends, to provide them with an opportunity to give something back to those who often provided their social support system.” American sensibility tends to view such a program as a privilege, but other nations approach the idea of community integration and family support with creativity and an eye for quality of life that is completely absent from our own approach.
The Internet, especially social networking sites such as Facebook, has greatly assisted parents with disabilities who want to connect with their peers. Many of the parents who spoke with NCD use the Internet to connect with other parents with disabilities. But although the Internet provides wonderful opportunities to connect with other parents with disabilities, its usefulness has limits. For instance, a 2010 survey conducted by the Kessler Foundation and the National Organization on Disability found that 85 percent of adults without disabilities access the Internet compared with only 54 percent of adults with disabilities—a gap of 31 percent. For some parents with intellectual and other cognitive disabilities that affect reading ability, the Internet remains largely inaccessible.
Despite increasing opportunities for peer support, many of the parents who spoke with NCD desire a more formal and organized network. For instance, Ken, a father with HIV infection, hemophilia, and hepatitis C, told NCD that while Facebook has helped him connect, he wishes there were a more established group, similar to the national organization Parents, Families and Friends of Lesbians and Gays (commonly referred to as PFLAG). Ken also expressed interest in having a conference for parents with disabilities and their families. He said that he and his wife, a wheelchair user, are always looking for “concrete examples of how it’s been done.” Kathryn, a mother who is a little person and a wheelchair user, wishes more peer supports and social gatherings were available for parents with disabilities and their families. Kathryn also believes that the lack of role models is a significant barrier for parents with disabilities. Lindsay, a mother with physical disabilities and an acquired brain injury, has found very few role models for parents with acquired brain injuries.
Raising children can be very stressful. For parents with disabilities, limited peer supports often leave them discouraged and lacking necessary information. Peer support networks can be easily developed or expanded at a minimal cost and would be supportive for many parents. NCD recommends broader dissemination of national networks and Listservs, blogs, and so on. A primary national network should include peer staffing, provide peer-to-peer links, gather information, and provide links to other networking efforts, including those in state Web sites. This network should also maintain an accessible Web site and “warm line” (during business hours) with cross-disability, legal, and crisis intervention expertise. State sites should include peer staffing and peer- to-peer networking and should link to the national network. State sites could also maintain accessible Web sites and warm lines with cross-disability and crisis intervention expertise, and links to resources in their regions. Peer support groups could be located in independent living centers and programs that specialize in parents with disabilities or deafness. These local parent support groups could provide the ongoing peer connections that are important for the alleviation of isolation in communities. Collaboration among national, state, and local services should be a priority, including training and dissemination of information.
Disability and Mental Health Service Providers
Disability and mental health service providers play a significant role in the lives of many people with disabilities, but the services they offer typically do not address their needs as parents. In fact, research demonstrates that the majority of mental health agencies have no idea which of their clients are parents, and 80 percent have no policies for pregnant clients or clients who are parents. Presumably, similar findings would be revealed with other disability service providers. Given the amount of time parents with disabilities spend with service providers, it is clear that their role as parents must be acknowledged and supported.
Mental Health Service Providers
As noted earlier in this report, parents with psychiatric disabilities lose custody of their children at the highest rate of any disability community: 70 percent to 80 percent. The National Co-morbidity Study of 1990–92 found that more than 44 million Americans (one out of every four people) have a mental illness, with 65 percent of the women being mothers and 52 percent of the men being fathers. Such high rates of parenting mean that the issue of custody loss is affecting a significant portion of the psychiatric disability community. In 2006, Park, Solomon, and Mandell conducted the largest study ever done comparing Medicaid-eligible mothers with and without claims for psychiatric services to examine their involvement with the child protective service system in Philadelphia. The authors concluded that the behavioral health systems and the child protective systems are gateways into each other’s services. Viewed this way, the failure to help such a large portion of the psychiatric disability community retain intact families represents a failure of our community integration ideals. The synergistic dynamic between mental health and loss of custody requires attention.
The literature generally agrees that the key to addressing this problem is to provide services around parenting before any involvement with the child welfare system. The Invisible Children’s Project of the National Mental Health Association (now Mental Health America) generated best practices in working with parents. These include the need for family-focused case management that help parents with finances and access to affordable housing; planning for emergency and nonemergency child care; referral to parent support groups and parenting classes; referral to resources for the children; referral to parent-friendly medication counseling and treatment services; vocational training; and crisis financial aid. These findings—combined with imperatives related to recovery-oriented services and the availability of evidence-based practices for provision of mental health services and supports—contribute to the urgency to address this issue now.
In addition, strong potential exists for collaboration between disability-community-based services and providers of infant mental health services. Spearheaded by ZERO to THREE, a national nonprofit organization that informs, trains, and supports professionals, policymakers, and parents in their efforts to improve the lives of infants and toddlers, infant mental health is a rapidly growing specialty that offers extremely early home-based preventive intervention, often beginning during pregnancy or at birth. Infant mental health clinicians typically work with parents and their infants and toddlers to support secure attachment relationships between parent and child. Developmental screening and guidance are usually included. Maternal depression and its impact on infant-parent relationships and interaction is a particular focus of these specialists; it is critical to address this promptly to prevent long-term negative effects on children.
Depression is a significant issue, not just among parents with psychiatric disabilities but in women with other disabilities. Studies have shown that women with severe mobility disabilities are more than six times more likely to experience depression than women without disability. Professionals often conflate the effects of depression with the disability of mothers, which undermines the appropriateness of services and the evaluation of capability.
Intellectual Disabilities Service Providers
With a removal rate second only to that in the psychiatric community, this disability community loses children at a rate of 40 percent to 80 percent. According to the President’s Committee on Intellectual Disability, “It is estimated that between 7 and 8 million Americans of all ages, or 3 percent of the general population, experience intellectual disabilities.” The 1.5 million parents with intellectual disabilities represent 2.3 percent of all parents with children under age 18.
Little focus has been directed at providing parenting support and services as part of general support for people with intellectual disabilities in the community. In 2000, Congress passed the Developmental Disabilities Assistance and Bill of Rights Act. An extensive 12-section chapter titled “Family Supports” contains not one mention of parents with intellectual disabilities.
State-level implementation of services to people with intellectual disabilities varies greatly. Parenting support is often not on the roster of services and, if it is provided, the model is left to the discretion of the agency. For example, in California the Lanterman Act of 1965 guarantees community integration services to people with disabilities; the mandate is implemented via 21 regional centers that serve approximately 250,000 people. Some centers, such as the East Bay Regional Center, list parenting training as a service and contract with at least one infant mental health agency to provide parenting support. Others, such as the San Diego Regional Center, do not list parenting support as a service at all. It is common in the state system to rely on unsophisticated independent living skills workers to provide “training.”
Parents who do not have adequate supports are at much higher risk of losing custody or rights to their children. This issue arises upon entry into the child welfare system, too: When case plans are designed, the child welfare agency typically flounders as it attempts to find evaluation, assessment, and intervention providers who are familiar with people with intellectual disabilities, and the services designed for people with intellectual disabilities are typically not focused on parenting.
The Arc notes that there “is a great for need community service agencies to create and provide individualized services based on each family’s needs.” McConnell, Llewellyn, and Bye surveyed service providers and identified four principles associated with effective services to parents with intellectual and developmental disabilities:
- Services need to be responsive to the parents’ individual needs and focus on the whole family to ensure that interests of both parents and children are served.
- Services must include long-term, ongoing supports, because the needs of children change and parenting skills must change as children mature.
- Services must consider the special learning needs of the parent. Learning must occur in the home, be repetitive, use demonstration, and use resources that require little or no reading.
- Services must help parents become part of their community.
Service Providers for People with Physical Disabilities, Blindness, or Deafness
Organized government support is scarce for people who have a physical disability or who are blind or deaf. Centers for Independent Living (CILs) are “grassroots, advocacy-driven organizations run by and for people with disabilities. They focus on civil rights, the independent living philosophy, and inclusion. All Centers provide individual and systems advocacy, information and referral, peer support, and independent living skills training.” CILs are funded under Title VII, Part C, of the Rehabilitation Act of 1973, as amended, and exist in every state.
CILs are a crucial support for many people with disabilities by providing four core services: (1) individual and systems advocacy; (2) information and referral; (3) peer support; and (4) independent living skills training. CILs have the potential, with training, to support parents with disabilities, especially to advocate regarding transportation, housing, financial advocacy, and assistive technology issues, and to offer parent support groups.
Rehabilitation centers rarely provide parenting skills training, instead focusing on self-care skills training. The National Federation of the Blind has a Committee on Blind Parents with a very active Listserv, and the Hadley School for the Blind offers a series of parenting classes as correspondence courses to people all over the country. In general, though, schools for the blind and the deaf do not focus on parenting skills in their curricula and do not offer parenting training to their consumer communities at large. Perhaps existing parenting education courses offered at hospitals and by local agencies could be modified to address the needs of blind parents, who tend to learn the most from other blind parents.
Parents with physical disabilities, blindness, or deafness may receive services from state agencies, such as state vocational rehabilitation agencies and agencies for the blind and deaf. These agencies must be aware of their consumers’ roles as parents and, where possible, provide services that benefit the entire family. Further, these agencies must gather data on parents with disabilities.
Early Intervention and Prevention
Early intervention and prevention programs have the potential to provide significant support to parents with disabilities and their families. Federal legislation mandates family-centered early intervention (EI) services for infants and toddlers (age zero to three) with established diagnoses of developmental delay. Some states also serve infants and toddlers who are deemed to be at risk for developmental delays. Risk factors may be physical (e.g., low birth weight or exposure to infectious disease) and contextual (e.g., living in poverty or having a parent who is compromised by illness). Research demonstrates that early intervention and other prevention model programs have positive effects on children, particularly with regard to cognitive and language outcomes. Programs that focus on parental participation appear to be more effective than those that minimize or disregard the role of parents.
Head Start (HS) is the largest provider of early childhood education in the United States. Established more than 30 years ago, it exemplifies the whole-child perspective of family-centered interventions, working toward wellness for all families. Head Start is a multifaceted program that provides child care, preschool education, health and social services, disability services for children, and parent involvement opportunities to low-income families.
Although nationally Head Start does not identify parents with disabilities in its system, it plays a critical role in the lives of many parents with disabilities and their families. According to a 1997 survey, 85 percent of Head Start programs in a six-state region reported serving parents with disabilities. Thus, “HS staff have consistent, frequent contact with families with disabilities and may be influential in providing social support, referrals, [and] information, and modeling appropriate interaction styles with children.” The survey revealed that these Head Start programs provided the following services to parents with disabilities: 85 percent provided or made referrals to community agencies; 78 percent provided educational information in different ways; 76 percent provided social support; 48 percent adapted materials; and 18 percent used other strategies (e.g., increased access to classroom and used interpreters). The same study identified a significant need for the development of policies, more expertise, and training.
Programs such as Head Start have great potential to support parents with disabilities. For example, parents with psychiatric disabilities often need strong natural support networks; Head Start staff could play a critical role in offering friendship and support, information, and instruction in parenting skills to these families. Staff could also play a role in enabling parents with intellectual disabilities to nurture and care for their children in the most effective ways. Further, “Head Start staff can play critical roles as advocates for parents in their caretaking roles by (1) supporting parents as the primary spokespersons for themselves, (2) providing child development and parent education classes, (3) reinforcing parenting skills already learned, (4) linking the parents to pertinent services such as assistive technology, and (5) providing adaptive equipment that facilitates and eases caretaking of children.” Although Head Start is expected to have access to assistive technology and adaptive equipment for children with disabilities, the system has not addressed the needs of parents with disabilities. This is a crucial area for training and the expansion of resources to serve parents with disabilities and their children.
Early Head Start (EHS) potentially can play an even greater role in supporting parents with disabilities and their children than Head Start, because it offers home-based preventive and supportive services beginning in pregnancy and continuing until the child is three years old, as well as centers for infants and toddlers. To maintain continuity of services, many organizations offer both Early Head Start and Head Start. Both programs are available across the country, serve very low-income families, and are expected to implement ADA requirements. Both are required to serve at least 10 percent children with disabilities, and both could use more expertise regarding parents with disabilities and their families. As part of its new national center, TLG offers training to the national Early Head Start system on parents with disabilities and their children. The organization has created a model Early Head Start that focuses on families with disabilities in parent or child.
Each Early Head Start or Head Start develops its own criteria for enrollment, but national priorities include very low income, SSI or other public assistance, homelessness, or foster care. Children of parents with disabilities may have disabilities of their own and thus may be prioritized to meet the 10 percent requirement for enrollment of children with disabilities in each program. Children who do not qualify as having a disability may, in some locations, gain priority for enrollment because of a parent’s disability; however, enrollment based on parental disability is not guaranteed. For example, Kathryn’s daughter qualified for early intervention and therefore EHS/HS because she was born premature, not because of her parents’ disabilities (both are little people and wheelchair users). Kathryn believes that eligibility should be “family based,” meaning that it should include parental disability.
Early intervention and other prevention model programs appear to have the potential to fully accommodate parents with disabilities. “For example, the program’s traditional flexibility and accommodation is well suited to meeting the needs of families with disabled parents.” Furthermore, EHS/HS already provides many of the components necessary to serve parents with disabilities: outreach networks, access to educational specialists, individually tailored educational plans, and close ties to a range of social services. In addition, EHS/HS’s target population—children and families in poverty—is similar in many ways to families in which a parent has a disability: “Both groups are parenting in compromised circumstances that often include low-income, unsafe housing, unemployment or underemployment, and inadequate social networks.” Efforts must be made to ensure that parents with disabilities and their children are considered for services and that the system provides training and resources to meet their needs.
Protection and Advocacy System
People with disabilities have a long-standing history of experiencing discrimination and segregation. To combat this discrimination, P&A agencies are federally mandated to provide legal representation and advocacy on behalf of people with disabilities. P&As, which “collectively, are the largest providers of legally based advocacy services to people with disabilities in the United States,” provide their services “through a variety of vehicles: individual representation; education of policy makers; advocacy for groups; information and referral services; rights education; and self-advocacy training.” “The fundamental mission of the P&A System is to respond to allegations of abuse and neglect and other violations of the rights of persons with disabilities.” P&As achieve their objectives by “pursuing legal, administrative, and other appropriate remedies under all appropriate Federal, state and local laws.” There are 57 P&As—one in each state and territory, and a Native American P&A.
Parents with disabilities that are involved with the child welfare or family law systems, often face insurmountable barriers to retaining effective and affordable legal representation. The majority of P&As do not represent parents with disabilities in termination or custody disputes. While they have been instrumental in advocating for legislative changes to child custody law and the provision of adaptive baby care equipment in California, they rarely accept child welfare or child custody cases. The National Disability Rights Network, the umbrella organization for state P&A agencies, lists criminal justice and juvenile justice cases as issues for which it will provide services, but not family, probate, or child welfare cases. This is troubling, because there is no right to counsel in the latter type of cases. In a national study of 102 parents with disabilities who were experiencing child welfare or child custody difficulties, only 24.5 percent contacted P&A for help; most of those who did not contact P&A said they were unaware of the service. Of those who did contact P&A, none received any assistance. The P&As’ hesitation probably reflects the fact that the need is so great—the agencies might believe that they would drown in a flood of cases if they began handling child welfare and child custody cases. However, a few P&As have begun to make parenting rights a priority, and it is hoped that more will follow suit.
Given the P&As’ extensive experience representing people with disabilities, a stronger collaboration between P&As and the attorneys who represent parents in termination and custody proceedings would undoubtedly generate more positive results for these parents. P&As must make parenting rights a priority.
Regardless of whether or not they have a disability, all parents need supports, both formal and informal, to help them in parenting. And yet, interdependent parenting practiced by parents with disabilities is perceived as inadequate. With proper supports—such as PAS, housing, transportation, benefits, health care, peer support, early intervention and prevention, P&As, and CILs—most parents with disabilities and their families will have greater opportunity to live and grow together.