Legislative Briefing Papers on Disabled Young Women
Sarah Tom and Alice Wong
Coming of Age with a Disability: Ways to Improve the Transition to Adulthood for Young Women with Disabilities
Transitioning from childhood to adulthood is always a bumpy road. For most Americans this is the stage when they stretch their wings and move away from home, begin higher education, or obtain employment. For young women with disabilities, transitioning to independence often requires more foresight and planning than it does for their able-bodied peers. Disability affects individuals in unique ways, as no two people who have even the same disability will have identical outcomes or needs.
The goal of this brief is to demonstrate how healthcare is crucial for girls with disabilities as they transition to adulthood. This brief will focus on four issues in health care and transitioning: access, starting a new insurance or system of health care, maintaining that insurance while working, and well-being. Healthcare takes on a distinct role in each transition. Healthcare may involve finding new ways to function on a daily basis or obtaining medication, or guidance in dealing with a changing disability. Health care is a factor that demands more attention for many young women with disabilities. While adequate health care is a universal need, young women with disabilities may have more intense and additional needs. In many cases if health care coverage fails during the transition to womanhood, the success of the entire transition is in jeopardy. Young women with disabilities must have access to the tools that allow them to pursue their participation in society.
Access to Healthcare
Just because a young woman has a disability does not mean that every time she goes to the doctor that she has a disability-related request. Many, though not all, medical practitioners see the disability before they see the person. They become focused on the disability, and the ear infection or sprained ankle or whatever was the primary reason for the visit becomes secondary. Likewise, sexuality is a frequently neglected topic. Young women with disabilities want to be viewed as women with questions and needs regarding their sexual health. Instead of assuming her health needs are only related to her disability , healthcare providers should be mindful that she has the same concerns as other young women regarding pregnancy, sex, and birth control. On the other hand, young women with disabilities also need specific information about how their disabilities interact with their sexuality and reproductive health.
Barriers to access can be both physical and attitudinal. Although there is not much research concerning healthcare access for young women with disabilities in university healthcare settings, individual accounts indicate that there are significant barriers.
Here is an example of how healthcare providers lack an awareness of the needs of young women with disabilities: a young woman with a disability who is a student at the University of California goes to the campus health care center and needs to take a urine test. She uses a wheelchair and needs assistance transferring to the toilet. The staff refuses to assist her and she must go back to her dorm, wait for her personal care attendant to come that evening, and then go back to the health care center to drop off the sample. The staff explains to the student that they simply are not allowed to assist in transfers. In this case, she was denied physical access to timely care because of an attitudinal barrier. Perhaps the center was afraid she would sue them if they dropped her. Perhaps they felt it was not worth ten minutes of their time to assist her. One would think that of all people, medically-trained professionals would have the skills to assist in this situation.
One young woman with a physical disability is a UC student and receives her primary health care at the university health clinic. Because of her disability, she needs regular bladder function monitoring – usually done through a routine urine test. Her preference is to do the procedure at the health clinic like other patients. But the clinic refuses to assist her with this and requires her to pay an attendant to assist her at home and then bring her urine sample back to the clinic. The barriers for her are numerous: she must pay for a service that is free for other students, the efficacy of the test is jeopardized, and she is treated as an unwelcome “problem”.
A New System
Getting and Keeping Insurance While Employed
Like all teenagers who become adults, earning an income is an aspect of becoming independent. Many young women with disabilities start new systems of health care in their transition to adulthood. Navigating the bureaucracy is just one more stress to the overall complications of transitioning. For some young women, this means getting Medi-Cal, for others navigating employer insurance programs. Unfortunately young women with disabilities have few resources for becoming educated about these important decisions.
Young women with disabilities who are on Medi-Cal and receive attendant care services through In-Home Supportive Services face additional constraints when pursuing the possibility of employment. Having health care insurance and earning a living are crucial for women to live self-sufficiently with a high quality of life. In order to remain eligible for programs such as Medi-Cal and IHSS, young women with disabilities are limited in their asset accumulation or they are in jeopardy of losing their benefits. Although California has a new Medi-Cal buy-in program that raises the income ceiling, the asset limit remains fixed at ??? ALICE – WHAT IS THE CURRENT AMOUNT??. While both health care and employment are vital, young women with disabilities may have to choose their health care over a full-time job or advancement in their careers in order to remain independent and healthy.
Because health care coverage is crucial to more facets of life for the young woman with a disability than the average able-bodied young woman, losing health care is an enormous concern. In some cases this means students will pass up internships or that college graduates will pass up high paying jobs because they fear that earning too much will disqualify them for their public insurance. Despite a young woman's education and aspirations, the risk of losing her insurance due to an increase in income or assets is a risk too great. To facilitate young women with disabilities' transition into adulthood, public policies must remove the constraints that exist on their income and assets while allowing them to keep necessary insurance. Having insurance and employment can facilitate a young woman's independence and ability to become a productive member of her community.
In this transition toward adulthood, young women face challenges to maintaining and improving their senses of well-being. Well-being entails many aspects of a young woman's life, particularly when she has a disability. Availability of emergency personal care attendant services, emergency wheelchair repair, veterinary care for service animals, emergency American Sign Language and other language interpreters contributes to a sense of well-being. Having access to recreational activities and facilities can contribute to her physical and mental health, act as a preventative measure against chronic conditions, and encourage greater social participation. For example, range of motion exercises for a woman with a physical disability could increase her flexibility and overall comfort. However, most health care insurance does not coverage such “extra” services unless deemed medically necessary.
A sense of well-being also includes feeling safe and secure in public and private spaces. Violence and abuse towards young women with disabilities are realities that often remain unreported and unnoticed. Young women need more guidance in recognizing the seriousness of such crimes and how to protect themselves. On the same hand, authorities who deal with survivors of violence and abuse need to know how to best serve young women with disabilities. With these supports and advocates in the community, young women with disabilities can have more confidence in their ability to live a healthy, independent, and productive lifestyle.
Young women with disabilities have more on their plates than their non-disabled peers. The world they live in requires them to know themselves well and how to communicate effectively to a myriad of groups. The accumulation of self-awareness and the ability to advocate for oneself is a process with which young women with disabilities are continually engaged. This process is also plagued with risks, uncertainties, and fears. In the area of healthcare, young women with disabilities must navigate through new systems of healthcare, balancing their eligibility for services with their career goals and life aspirations. Much of this fear and uncertainty could be abated by more specific and youth-targeted information.
Regarding well-being, negative experiences with authorities and healthcare providers could spur more serious consequences if the young woman becomes disillusioned and afraid to communicate her needs. Being by yourself for the first time and not understanding the resources and services available to you can constrain young women with disabilities even further and have a multiplier effect in the future. If a young woman is robbed by her personal attendant and left without money and identification, she is robbed in more ways than one. Her ability to trust other attendants and to have confidence in herself as an employer is endangered. Without support and encouragement, she may want to move home and never hire another attendant, believing that she will be victimized again. On the other hand, with a network of friends and healthcare professionals, she can use the robbery as a learning experience.
While young women without disabilities encounter many of the issues presented, it is important to highlight the particular salience of these issues to young women with disabilities. As all young women face barriers and challenges as they grow up, young women with disabilities can bring a unique perspective as to why healthcare is universally essential to one's well-being.
Thanks to Elizabeth Hughes and Stefanie Stroup for their excellent contributions.