Appendix IV

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Reproduction and

Contraception

People with disabilities have experienced a great deal of pressure not to have children. In the past many were sterilized without their consent. Though illegal in California for several decades, the practice continues in other countries. Many parents who have disabilities have had to fight for their right to be a parent or to keep custody of their child. Almost all have had to fight hard and continually for the access, services, and resources they needed. There has been very little support for women with disabilities who want to have children. Through the Looking Glass in Berkeley remains the main organization focused on support and advocacy for parents with disabilities, and serves many parents with developmental disabilities. It also provides information on pregnancy and childbirth for women with physical disabilities. State funded Regional Centers for people with developmental disabilities may help parent find resources as well. (See Appendix III.)

Some parents with developmental disabilities have adopted. This is an important option for people who do not choose pregnancy, which can be difficult or dangerous for women with some disabilities. The Question of David by Denise Sherer Jacobsen is about one couple who adopted.

Fertility Issues

Very few disabilities affect fertility. However, an individual with a disability may experience infertility. Infertility is on the rise. Sexually Transmitted Infections (STIs) can lead to pelvic inflammatory disease (PID), which can cause infertility. In addition, fertility decreases with age. This is important information for all patients to have, including those with disabilities.

Genetic Counseling

Many people still assume that a disability, genetic or otherwise, is an automatic reason to have an abortion or sterilization. Occasionally infertility has a genetic basis and genetic counseling may be indicated. Some people with disabilities that may have a genetic or chromosomal basis may also choose to see a genetic counselor. In either case, it is important to see a genetic counselor whom they can trust to provide unbiased information and counseling. The genetic counselor should respect the client or client's agenda and not focus on disability issues if infertility or another issue is the presenting problem.

Deciding on Contraception:

Patient and provider should discuss birth control methods together, looking at:

  • The patient's lifestyle and personal preferences
  • Effectiveness and usability
  • Potential side effects
  • Interaction with the patient's current medications

Patients may want to examine in-depth protocols or descriptions for using each method. Family planning clinics have this information, as does the handbook, Contraceptive Technology, which is updated every few years and can be purchased from Irvington Publishers, 522 E. 82nd Street, Suite 1, New York, NY 10028. The website, www.ppfa.org has in-depth descriptions of each method for the layperson. The website www.sexualhealth.com has information specifically for women with disabilities. For fact sheets on contraception for women with epilepsy and mobility impairments, visit: http://www.4woman.gov/wwd/wwd.cfm?page=75

Consider all options. Low-dose contraceptives, including pills, Norplant and Depo Provera, are progesterone-only methods that increase the options for people with disabilities who cannot use estrogen-containing pills. The "female condom," a sheath inserted in the woman's vagina before intercourse, and the Mentor condom, which has a narrow band of adhesive to keep the condom on the penis without holding, may be more user-friendly condoms. The Avanti condom, made of polyurethane, can be used by those allergic to latex.

Sterilization

Many people still think sterilization will solve their concerns about the vulnerability, fertility or inappropriate behavior of their disabled child or client. Sterilization cannot protect from sexual abuse, or cure sexual acting out, abusive or inappropriate behavior. It has no effect on menstruation.

It is important to promote education as an alternative to sterilization. There are programs that will teach self-protection skills, like recognizing abusive situations and saying "no." And even girls with severe disabilities can learn to handle their periods with early education and good behavior training programs.

Sterilization is the preferred birth control for couples who have had all the children they wish, and for a few people who do not want children. Some people with disabilities do choose sterilization. However, making a permanent decision such as this may be difficult for a person with a cognitive disability. Fortunately, other birth control methods such as Depo Provera and Norplant provide more options.

Some people cannot learn to give informed consent. For them to get sterilized, it is necessary for someone to become their conservator and go to court. It is almost always better to explore other birth control options.

Sexually Transmitted Infections (STIs)

Only barrier methods such as condoms and dental dams prevent HIV and other STIs. It is very important that everyone know how to use and obtain condoms. Practice, which can be done on a rubber or wooden model of a penis, is very important. Water based lubrication makes the condom easier to put on and reduces breaking.

Abortion

It is always important to obtain informed consent for an abortion and to counsel the patient to make sure she is making her own decision. Women with disabilities have been denied abortion or pressured to choose abortion by parents, care providers and others. A conservator can consent for a conservatee to have an abortion. If the provider feels that the patient is being pressured to do something she does not want, the provider should call Protection and Advocacy.

 

A Partial List of Contraceptive Implications for People with Disabilities

Barrier methods

  • May be difficult to learn.
  • Communication with partner about use of condoms may be difficult.
  • Partner assistance may be necessary.
  • Use may be painful for women with blood disorders or patients with skin problems that cause irritation.
  • Careful hands-on instruction in use is important for most people.
  • Condoms protect against STDs and are readily available.

Oral contraceptives that contain estrogen

  • User may need help keeping track of schedule.
  • May be contraindicated if circulation is affected, if a disability is due to diabetes, glaucoma, or vascular disease.

Low dose or mini pill (no estrogen)

  • User may need help keeping track of schedule.
  • Increased spotting may be difficult to manage.

Depo-Provera

  • May interact positively with some seizure medication.
  • Amenorrhea associated with Depo may be a plus or a minus for some patients.
  • Long-term possible bone loss may be a concern.
  • Provides protection for a longer period of time than barrier methods or contraceptive pills.

Norplant©

  • Making a decision with a 5-year horizon may be difficult for some.
  • Spotting may be difficult to manage.
  • If disability affects upper limbs, may need to insert in leg.
  • The feel of the inserts may be irritating.

IUD

  • User may forget to check strings.
  • Partner assistance may be needed to check strings.

Spermicides

  • May cause irritation; this can be dangerous if it is not easily detected or if the individual is vulnerable to infections.
  • Offer protection against STDs and are readily available.

Tubal ligation or vasectomy

  • Must be eighteen (21 if on Medi-Cal) and able to give informed consent.
  • User may have difficulty making a long-term decision.

Care Provider Handout "Birth Control - How Care Providers Can Help"