Impact Impact Feature Issue on Violence Against Women with Developmental or Other Disabilities

Gail is 29 years old and has severe cerebral palsy. It is hard for people to understand her at times. Last year, when Gail was working at an office downtown, she was fondled by one of her co-workers. She has been depressed and having problems sleeping ever since. The residential program staff took her to the local rape crisis center for counseling. Unfortunately, when Gail arrived at the rape crisis center, the receptionist couldn’t understand what she was saying and asked two other people to try to figure it out. When the counselor met with Gail, she seemed uncomfortable with her and kept talking to the staff

If sexual assault and domestic violence organizations were to target the population facing the highest risk of violence and serve them first, that group would be women with disabilities.

member who came along rather than to Gail herself. When Gail went to use the restroom, she discovered that it was downstairs and there was no elevator to give her access. She left the center humiliated and even more depressed.

Unfortunately, Gail’s experience is not uncommon. Agencies providing services for victims of sexual and/or domestic violence are often inadequately prepared to meet the needs of people with developmental disabilities. The rate of abuse of people with disabilities is staggering – research has found that as many as 83% of women with developmental disabilities have been sexually abused (Hard, 1986), at least 85% of women with disabilities have experienced domestic abuse (Feuerstein, 1997), and much of this abuse is chronic or severe (Sobsey, 1994). Yet, very little has been done in most communities to ensure that crisis services are accessible or to try to prevent such abuse.

There are several reasons for this lapse. Some of these reasons are societal. People with disabilities are often treated as children, devalued, or simply not thought of when programs are designed. Physical and attitudinal barriers persist even in programs that pride themselves on valuing diversity. Other reasons are related to the nature of victim service programs themselves. Such agencies are typically operated on very limited budgets; purchasing even basic office supplies can cause a hardship. Such agencies may be overwhelmed when considering the cost of purchasing a TTY or building a ramp. Finally, the staff in victim service programs are often inexperienced with disability issues and may need training to provide appropriate and accessible services.

How Can Violence Services Meet the Needs of Women with Disabilities?

The purpose of this article is to outline considerations in operating a sexual and domestic violence program that is accessible to and appropriately serve women with mental retardation and other developmental disabilities. It is important to note that violence disproportionately affects both women and men with developmental disabilities in our society, and both need support, though the focus here is on women. These considerations have come from my experience in sexual assault and domestic violence work: I assisted in the creation of one sexual assault program in Missouri, founded a statewide sexual assault and domestic violence program for persons with disabilities in Texas, and am now an advisory board member on disability services at a domestic violence center in Massachusetts. The considerations are:

• Recognize the hugeness of the problem. If sexual assault and domestic violence organizations were to target the population facing the highest risk of violence and serve them first, that group would be women with disabilities. Abuse by partners, caregivers, and family members is so common among women with developmental disabilities that it can be assumed to exist in any locale.
• Change the definition of domestic violence. Among people with disabilities, domestic violence can occur between intimate partners just as it does among persons without disabilities. However, people with disabilities also face alarming rates of violence from personal care attendants. To effectively provide services to this population, we must recognize that the perpetrators are not just romantic partners, but may also include those who provide personal care. This directly affects eligibility for services and prevention strategies.
• Provide overlapping prevention and treatment services. Providing education to help prevent abuse is tremendously important and can be used effectively with people with all types of disabilities. Treatment services (such as crisis counseling) are also critical since so many people have already experienced violence and are likely to need support to heal from it. We found it was very common for disclosures of abuse to surface at educational trainings. The same individual may benefit from both types of services at different points in their life or simultaneously.
• Adapt policies to ensure programs are accessible. Making physical changes to meet accessibility standards is clearly critical to appropriately serve persons with disabilities. Yet, even with an accessible site, many agencies have policies in place that limit how readily they may be used by people with disabilities. In our program in Texas, we found that we needed to make several changes right away: changing our intake forms to ask a few additional questions, being flexible and reading the forms to people or mailing them out in advance if needed, tracking whether callers had a disability when appointments were set or hotline calls came in, and altering our long-standing policy of only seeing clients in our office to accommodate the needs of people with disabilities who did not have access to transportation. Even simple things like the tiny print on our business cards posed a problem to some of our clients.
• Facilitate an ongoing dialog between victim service programs and disability programs. If the problem of violence against people with disabilities is to be addressed, there must be collaboration. We found that both types of agencies benefited from staff training. It is also useful to participate in each other’s conferences and publications and to invite one another to join advisory councils or boards. Bring up problems clearly and fairly, and suggest possible improvements.
• Use a community approach to the problem. Once both the victim service programs and disability service providers are on board, there are still many other people it is important to include. Depending on the age of the population to be served and the types of disabilities, these may include parents and other family members, special educators, protective services or law enforcement personnel, the staff of residential or vocational programs, therapists, case managers, employers, and any others who have a significant role in the life of the person with a disability. Through this inclusive approach, the risk of abuse is reduced in various environments; treatment is received; support is provided by family and/or staff, and abuse is more likely to be reported.

But We Have So Much Other Work to Do…. Do We Have to Do This, Too?

The prospect of taking on another big challenge when your work is already overwhelming can be daunting. Think of a job coach who is helping three people with mental retardation find new jobs, learn new work and social skills, and access transportation to get to work. Being told to also watch for signs of abuse, talk to the individuals about personal safety on the job, and actively report signs of abuse may sound like it is just too much. Similarly, imagine the staff of a small, poorly funded rape crisis program who are already struggling to keep their hotline operating 24 hours a day, have a waiting list for support groups and are only minimally able to provide any services in Spanish to the Latino population in their community. The prospect of rethinking everything their agency does to make it work for an unfamiliar group of people with disabilities may seem impossible.

The bottom line here is to realize this work is of immense importance. The impact of sexual or relationship violence on its victims is often extreme. It can affect self-esteem, mood, work performance, and everyday functioning in very negative ways. It is very difficult to succeed in almost any area of life while simultaneously being abused. Thus, doing anything we can to make prevention and treatment services available to those who need them most is worthwhile.

To begin to improve access, there are many practical things that can be done. People who work in the disability agencies or in victim service programs can start with the following:

• Call your local disability or victim services center and learn about them.
• Set up a meeting to learn about their current services and open a dialog about disability and violence.
• Offer to provide professional training for their staff, and let them train yours in exchange.
• Look at how accessible facilities and programs currently are, and discuss needed changes.
• Co-submit applications for funding for renovations, adaptive equipment, educational materials, or outreach projects.
• Exchange materials about each agency's programs and distribute them to consumers, families, and staff.
• Disability agencies should develop a written policy on what to do when sexual or domestic violence occurs.
• Victim service agencies should write a policy on accessibility and non-discrimination.
• Create an advisory council or task force in your community to continue and expand this dialog.
• Support one another by attending fundraisers and community events, and consider filling board vacancies with persons with needed expertise in disability or violence issues.

This type of cooperative effort can be a very effective way to reduce the risk of violence against women with disabilities and to respond appropriately when it does occur. Working together is critical to truly serve this very vulnerable population.