Chapter 1 - Introduction

A. The Need for Services

All women need to receive regular gynecological exams. Women with disabilities should have exams at the same frequency and for the same reasons as other women.

However, this standard is rarely achieved. In a recent study in one Bay Area county, a survey of women with disabilities found that only 20 out of 450 women 18 years or older had ever had a Pap test. Even more troubling, only three out of 70 women over the age of 50 had ever had a pelvic exam. The Breast Health Access for Women with Disabilities Program in Berkeley estimates that nationally as many as 15 million women have functional limitations that may be barriers to clinical breast exams, mammography or breast self-exams.

When important prevention services such as these are reduced, there is a proven increase in the risk that serious health problems will go undetected and untreated.

The purpose of this manual is to help clinicians provide these services. To do this successfully, it is important to look at the reasons for decreased services, the many barriers to reproductive health care faced by women with developmental disabilities.

Access Barriers

There are physical as well as communication barriers to access.

• Medical staff are rarely trained to communicate with women who have disabilities that affect communication and learning.
• Health education materials in appropriate formats are not always available.
• Staff are not trained in alternative methods of providing the exam and transferring patients.
• Medical offices and equipment are not accessible.
• Getting to a clinic is often a major ordeal that involves coordinating assistance and finding accessible public transportation.
• Sign language interpreters are not available when needed.

Attitudinal Barriers

There is a common belief that women with disabilities do not need the gynecological exam because they are not ­ and have never been ­ sexually active. We cannot assume that women with developmental disabilities are not sexually active. A woman may seek sexual contact and conceal it because those around her disapprove. She may be sexually abused without her parents', care giver's or attendant's knowledge ­ or she may be abused by one of these people. She may not know that abuse is wrong, or understand why. She may not be able to verbally report her experiences, or she may have tried to tell someone but was not believed. Or, if abuse was combined with affection, treats, caring behavior and/or positive sexual feelings, she may feel ambivalent about the abuse or even participate willingly in activities, which others define as abusive.

Emotional Barriers

Many women are uncomfortable having a gynecological exam. A patient with a developmental disability may have additional concerns. She may have concerns about getting on the exam table or reading consent forms. She may be uncomfortable with touch or new environments. She may not know her "family history". She may have never used a tampon or had intercourse. She may have been taught never to "touch herself." She very likely has been taught not to let anyone else touch her "private parts". She may have reached the age of 30 or even 40 without ever having had a pelvic exam. For some, coming to a clinic or taking a pill is in itself very frightening. Sometimes a cycle of problems is created. Any woman's first exam can be frightening. Lack of sexuality education, discomfort with touch, or a history of sexual abuse can increase this fear. If the first exam results in trauma, the next exam is even more difficult, for both the patient and the health care provider. In addition, many women with disabilities are socialized to "please" and may find it difficult to voice their fears and concerns.

Financial and Systemic Barriers

Most health care systems face severe financial and time constraints. If gynecological health care begins at the appropriate age with adequate and appropriate health education and care, and that care is repeated at the medically recommended or indicated intervals, the gynecological exam will usually be much easier for the woman and both easier and quicker for the health professional. In addition, it has been proven that women with developmental disabilities who receive regular exams have better gynecological health, learn more about their bodies, and are more likely to report abuse.ay find it difficult to voice their fears and concerns.

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B. Developmental Disabilities

Many misconceptions still exist concerning people with developmental disabilities. People with developmental disabilities are individuals, with a wide and often unpredictable range of skills, abilities and needs.

Developmental disabilities, as defined by California regulations, include "mental retardation, epilepsy, cerebral palsy, autism and other conditions similar to retardation that require similar treatment." These disabilities have an onset before age 18 can affect development.

Many state-funded services are provided to help children with developmental disabilities grow up and develop in healthy ways and experience the same learning opportunities that other people have.

Many people have disabilities that are not easily diagnosed. And some have more than one disability. For example, perinatal brain damage can cause mental retardation, cerebral palsy and epilepsy. Yet most people with cerebral palsy and epilepsy are not mentally retarded.

People with developmental disabilities are often harmed by the assumptions others make about their conditions and abilities. For instance, someone whose speech is severely affected by cerebral palsy or who is heavily medicated may not be able to develop her native intelligence because she is not given opportunities to learn language skills or engage in social learning experiences.

Developmental disabilities are not diseases and are not progressive, although secondary conditions may develop. Like all patients, those with developmental disabilities may have other related and unrelated conditions, health concerns and diagnoses as well.

An assumption that the disability is the patient's only problem may endanger the patient's health by causing other health issues to be overlooked or ignored. For example, one woman felt a lump in her breast and her doctor told her it was a bulging muscle from pushing her wheelchair. She was later diagnosed with stage three breast cancer, which ultimately proved fatal.

In another case, a young woman, with developmental and emotional disabilities, complained to her doctor of stomach pain and weight gain. The doctor assumed these were due to emotional distress. Pregnancy was not diagnosed until she was over five months pregnant.

Specific Developmental Disabilities

Mental retardation is a catchall term for impaired ability to learn and think either in the same way or at the same rate as the average person. Most people with mental retardation can achieve some independence as adults in their living situations, in their work, and in their relationships. Some genetic syndromes, such as Down's Syndrome, include mental retardation and have other implications for fertility, aging, pregnancy or other aspects of physical health.

Cerebral palsy is a set of chronic conditions affecting body movement and muscle coordination. It is caused by damage to one or more specific areas of the brain before, during or shortly after birth, or in infancy. People with cerebral palsy may have muscle tightness or spasms, involuntary movement, disturbed gait and mobility, abnormal sensation or perception, and/or impairment of sight, hearing or speech. A person with cerebral palsy may experience mainly stiff and difficult movement (spastic), involuntary and uncontrolled movement (athetoid), a disturbed sense of balance and depth perception (ataxic), or a combination of these effects.

Epilepsy occurs when there are recurrent sudden and usually brief changes in the brain function due to disturbed electrical activity. This can cause alterations in movement or consciousness. Epileptic seizures may be generalized, affecting all brain cells, or partial. Results range from total unconsciousness to a fleeting, staring, trance-like state. Epilepsy cannot be cured; it can usually, but not always, be partially or completely controlled by anticonvulsant medications. These medications may cause depression, loss of mental function, changes in sexual feelings and function, and other changes.

Autism affects an individual's ability to use and understand language and social cues and to interact with others. It is also characterized by repetitive body movements, behavior patterns and verbalizations and by impaired imaginative activity. People with autism often desire a full range of social, emotional, physical and sexual experiences, but their atypical response to sensory data may cause them to resist physical contact, make little eye contact, and avoid noisy and crowded environments. While autism is strongly associated with intellectual impairment, individuals with autism can be found with every level of mental ability and with a wide range of unusual "splinter skills". Autism is associated with many other conditions and syndromes, some of which may be considered the primary diagnosis, as in the case of Fragile X Syndrome. Autism usually appears in the first three years of life.

"What Do I Need to Know?"   Beyond the Diagnosis Whatever a patient's medical diagnosis, you will want to know how her disability affects your ability to provide medical care for her. You will want to ask functional questions such as, How will I communicate with my patient? What is her ability to talk and listen? Will I understand her? Do I need to hire a sign language interpreter? Does she use a communication device? Will she understand what I say and how will I know if she understands? Will we need pictures or videos to help explain our procedures? Will she be able to give informed consent? Will she be able to use my exam table and be examined? Is a better exam table available? Will I be able to answer her questions about sexuality and reproduction, such as questions about which birth control methods might work for her? Where can I find this information? Is it difficult for her to handle touch, pain, discomfort or a new situation? What can we do to prepare her? Will physical or sensory disabilities affect her ability to stand, lie still, see what I am doing, or learn breast self exam. Will limited sex education, sexual experiences, or contact with medical care providers make the exam more difficult for her? Will traumatic life experiences, such as a history of sexual or physical abuse, make the exam more difficult for her? These and other questions will be addressed in this manual, and are further addressed in the resources outlined in the appendices.

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C. Menarche and Menopause

Most women with developmental disabilities reach puberty and menopause at the same ages as the rest of the female population.

Menarche

Girls with developmental disabilities are often surprised by puberty because they have not received adequate education to prepare them for the changes. Those who are well prepared are better able to deal with the dramatic and often frightening changes to their bodies. Providers can help by urging parents to prepare girls before puberty starts. Remind parents of some of the signs of puberty that precede the onset of menses. Encourage parents to provide the sexuality education. Once fertile, all youth need to know the risks of pregnancy and STDs and how to prevent them.

The Bay Area has many good resources to help women with developmental disabilities find information and assistance. See Appendix III.

Menopause

Although changes such as menopause are predictable, many women with developmental disabilities are not prepared for them. Often care providers and medical providers are also unprepared. The identification and treatment of menopause-related concerns in the patient who is nonverbal is an especially difficult and uncharted territory. Appendix V is a handout that was prepared for patients and care givers to alert them to the possible physical and emotional affects of menopause.

Like other patients, women with developmental disabilities should be offered a full range of menopause treatment options, with the information and education which will allow them to choose either natural, untreated menopause or an appropriate medical intervention.

There is some evidence that women with Down's syndrome or epilepsy have an earlier menopause than average. For an excellent discussion of aging and developmental disabilities, including menopause issues and treatment, and referrals to current research, see Aging with Developmental Disabilities: Women's Health Issues (on the web www.thearc.org).

Long term use of medication or years of living with physical stress can lead to new health problems and symptoms usually associated with aging. People with certain disabilities may feel the wear and tear of aging earlier than the general population. By the time she has reached her thirties, for example, a female patient with cerebral palsy may already be dealing with problems such as increasing joint and muscle pain, declining mobility, increasing respiratory problems, bowel and bladder problems, pressure sores and skin breakdown.