SUPPORTING PARENTS WITH DISABILITIES AND THEIR FAMILIES IN THE COMMUNITY

Parents with disabilities continue to be the only distinct community that has to fight to retain and sometimes gain custody of their own children. Such adaptation is what the Council says should be appreciated and supported. “We need to shift the presumption that people with disabilities are unfit to raise families,” says Powell. “We need to assume they are capable and we need to support them.” Laws designed to protect people with disabilities are failing to maintain the rights of disabled parents to take care of their children.

Many families without any disabled family members tend to think of neurotypical and able-bodied as the norm for parenting. We need to show family dynamics and how disability adds dimension to parenting, benefit from having disabled parent(s) and how adaptive, out-of-the box thinkers many disabled parents are.” In addition to struggling to get or retain parental rights at all, disabled parents also face the inability to make choices about how they parent their children.

Instead of taking away disabled parents’ rights, we need to make sure disabled parents have access to the resources they need to parent effectively. It would be great if parents were given access to resources to make parenting even easier, though.

Disabled parents shouldn’t be shamed or worried about losing their parental rights when they ask for help. Children of disabled parents get an early introduction to life skills, whether it’s learning how to do something differently or becoming more self-sufficient.

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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.

 When parenting with a disability, 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 a parent with disabilities and their families in the community is not only the right thing to do, it is legally mandated.

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 husband but only spend weekends with my kids. With proper support, I know I could be a good, full-time parent.

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. The 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 travelling 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.

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.

Housing

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.  This means that people with disabilities who receive SSI would have to triple their income to afford housing. The unique needs of parents with disabilities and their families further compound the challenges of securing accessible, affordable, and appropriate housing.

Parents with disabilities experience a variety of difficulties in securing housing appropriate for raising a family. Parents with disabilities experience that housing is too expensive, and lacked sufficient space (especially storage space) and had rooms that were too small to accommodate their physical needs. Most of the time housing is poorly suited to families with children too few rooms, lack of safe outdoor play areas, or located on busy streets with traffic. Most 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.  “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.

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.

Transportation

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. 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.

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.

Public Benefits and Poverty

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:

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 social grants.

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).

Health Care

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. 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.

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. The prevailing presumption is that if women with disabilities will not or cannot engage in sexual activity, then they do not need access to gynaecological 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.

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 hysterectomies 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.

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.

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.

Women with disabilities often face significant barriers to receiving proper prenatal care as well as access during the delivery of their children.

Health care professionals must not only comply with their legal obligations to be fully accessible but must also provide reasonable accommodations. 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).

Peer Supports

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.

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.

Some disability organizations 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 National Association of the Deaf, Deaf Seniors.

Throughout the world, families headed by parents with intellectual disabilities tend to be less affluent and more isolated.

The Internet, especially social networking sites such as Facebook, has greatly assisted parents with disabilities who want to connect with their peers. But although the Internet provides wonderful opportunities to connect with other parents with disabilities, its usefulness has limits. For instance, some parents with intellectual and other cognitive disabilities that affect reading ability, the Internet remains largely inaccessible.

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.

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 ideas 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 literature generally agrees that the key to addressing this problem is to provide services around parenting before any involvement with the child welfare system. 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.

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.

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 organizations.

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 organizations 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:

Conclusion

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 personal assistance services, housing, transportation, benefits, health care, peer support, most parents with disabilities and their families will have greater opportunity to live and grow together. Disabled parents have just as much to offer their children as non-disabled parents do, and we need to create societal support for accessibility and accommodations so that all parents have access to the necessary resources for their children.

 

References

Kirshbaum, M. (1988). Parents with physical disabilities and their babies. Zero to Three, 8(5),

8-15.

www.ncd.gov

www.apa.org