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Sexuality & Reproductive Health

Introduction
Sexuality
Reproductive health
Family Planning
References
Resources for Families
Advisory Committee
Publication Information

Learning Points

  • Confirm that an extremely compelling reason for promoting sexuality education for individuals with developmental disabilities is the prevention of sexual exploitation and abuse.
  • Describe recommendations for physicians relative to the following:
    • Access to sexuality education
    • How to discuss sexuality issues
    • Physical sex education
    • Emotional issues
    • Sexual expression
  • Recognize that people with mental retardation or intellectual impairment are more vulnerable to sexual abuse than those without disabilities.
  • Restate four risk factors for sexual abuse; e.g.,
    • Intellectual impairment
    • Social powerlessness
    • Communication skill deficits
    • Impaired judgment
  • List five behavioral signs of sexual abuse; e.g.,
    • Behavioral change (e.g., depression)
    • Avoidance of certain settings or persons
    • Emergence of new fears
    • Social or emotional withdrawal
    • Excessive unprovoked crying spells
  • Delineate three strategies for preventing sexual abuse; e.g.,
    • Educate about the right to refuse unwanted sexual advances
    • Recommend training in self-defense, assertiveness and body integrity
    • Recommend extensive background checks on all caregivers
  • Discuss recommendations for physicians relative to┬áreproductive health and family planning.
  • Acknowledge that, in persons with development disabilities, informed consent is achieved through a subjective process, not by a document or signature and that patients should always be assured that they have a choice.
  • Refer families to appropriate resources.

INTRODUCTION
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In the past, many parents and professionals denied the importance of sexuality and reproductive health education and services for persons with developmental disabilities, believing these individuals had no sexual feelings or desires and were not suited to have families of their own. Fortunately, many changes in societal thinking have taken place, and the focus now is on promoting the reproductive and sexual dignity and autonomy of persons with developmental disabilities.

The inability to obtain appropriate sexual counseling for persons with developmental disabilities is largely a reflection of the absence of well-trained counselors. This type of counseling may be outside the realm of practice for many primary care physicians; therefore, it is vital to refer persons with developmental disabilities to appropriate consultation and counseling services.

SEXUALITY
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It is important for primary care physicians to incorporate sexuality education into the medical management of persons with disabilities. An extremely compelling reason for promoting sexuality education for individuals with developmental disabilities is the prevention of sexually exploitation and abuse.

Recommendations for Physicians

Note: The amount and level of information discussed should be based on how much each individual patient can understand.

Access to Sexuality Education

  • Ensure access to individualized education, healthcare and support regarding sexuality
  • Involve counselors, therapists, nurses and others as much as possible

How to Discuss Sexuality Issues

  • Establish how much the patient knows, then supplement with more information
  • Respect the family’s values and concerns
  • State sexual information concretely and repeatedly
  • Use pictures or dolls to illustrate, especially for children who do not understand verbal communication well

What to Discuss – Physical Sex Education

  • Help them understand what happens to their bodies as they mature
  • Educate them about foreplay, intercourse and conception
  • Discuss contraception and provide birth control as needed
  • Reassure them that masturbation is neither shameful nor physically harmful
  • Provide information regarding sexually transmitted diseases, including prevention, informed consent (discussed below) for testing, treatment and privacy rights
  • Provide physical assistance and/or adaptations for sexual activity when necessary
  • Reassure that urinary catheters do not prevent sexual activity
  • Encourage them to discuss their physical capabilities with sexual partners
  • Refer to books, pamphlets, sexuality education programs and other resources

What to Discuss – Emotional Issues

  • Help give persons with developmental disabilities a sense of being attractive to others
  • Discuss emotional and social maturation
  • Monitor for and ensure appropriate treatment for maladaptive sexual behaviors, sexual disorders or sexual dysfunction
  • Teach that sexuality and intimacy can be positive and enjoyable
  • Help them develop understanding, acceptance, respect and trust for themselves and others
  • Encourage them to discuss their sexual desires with partners
  • Refer to counseling as needed (individual, couple or group)

What to Discuss – Sexual Expression

  • Discuss how to express physical affection that conforms with family and societal standards
  • Discourage inappropriate public displays of affection
  • Discuss the importance of pleasure and affection
  • Encourage them to discuss their questions and concerns about sexuality with people they trust
  • Discuss mental capacity to consent to sexual activity
  • Teach them the right to refuse unwanted sexual advances

Sexual Abuse

People with mental retardation or intellectual impairment are more vulnerable to sexual abuse than those without disabilities because they are more likely to not understand what is happening during abuse, to be too afraid to resist, and to feel the need for acceptance by the abuser. Studies indicate that as many as 90% of people with developmental disabilities will experience some form of sexual abuse at some point in their lives. People who are abused are often afraid to discuss their painful experiences and are taught to not question their caregivers or authoritative figures – the people most likely to abuse them.

All forms of sexual abuse are serious and may have harmful psychological, behavioral and physical effects on the victim. The most severe consequences usually stem from long-term abuse by a known, trusted adult beginning at an early age.

Risk Factors for Sexual Abuse

  • Intellectual impairment
  • Social powerlessness
  • Communication skill deficits
  • Impaired judgment
  • Low self-esteem
  • Certain living arrangements (e.g., time spent alone with potential abusers)

Behavioral Signs of Sexual Abuse

  • Behavioral change (e.g., depression)
  • Avoidance of certain settings or persons
  • Emergence of new fears
  • Social or emotional withdrawal
  • Excessive unprovoked crying spells
  • Substance abuse
  • Atypical attachment to certain person
  • Fantasies about violence or victimization
  • Excessive bathing
  • Sleep disturbances, nightmares, bed-wetting
  • Eating disorders or loss of appetite
  • Resistance to physical exams
  • Sexually inappropriate behavior, esp. for age or developmental level

Physical Signs of Sexual Abuse

  • Bruises in genital areas
  • Genital discomfort
  • Signs of physical abuse
  • Torn or missing clothing
  • Excessive weight gain
  • Sexually transmitted diseases
  • Unexplained pregnancy
  • Seizures

Preventing Sexual Abuse

  • Educate about sexuality issues (see above)
  • Educate about the right to refuse unwanted sexual advances
  • Recommend training in self-defense, assertiveness and body integrity
  • Recommend extensive background checks on all caregivers
  • Encourage reporting of all unwanted sexual advances to a parent or trusted person
  • Minimize time spent alone with potential abusers

Treating Sexual Abuse

  • Refer for psychotherapy or counseling
  • Refer to victim programs or community mental health centers
  • Perform complete physical exam to detect any physical injuries
  • Test for and treat sexually transmitted diseases
  • Report all incidents to a child protective agency, adult protective agency (if over age 18), or other law enforcement agency

REPRODUCTIVE HEALTH
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Routine reproductive health maintenance is necessary for all persons, including those with developmental disabilities. A lack of routine preventive care results in lost opportunities for early detection and intervention for gynecological, breast and prostate problems.

Adequate reproductive healthcare is often not given to people with disabilities because of the following:

  • Inaccessibility of physician’s offices;
  • Discomfort of some physicians in managing patients with disabilities;
  • Difficulties in examining persons with lower extremity deformities or spasticity; and
  • Caregivers’; feelings of no need for such care.

Recommendations for Physicians

  • Perform standard routine gynecological, breast and prostate care, as long as patient is comfortable (if uncomfortable, weigh the pros and cons of performing)
  • Obtain informed consent (discussed below) for any tests, exams or procedures
  • Discuss menstruation and hygiene with females
  • Respect their right to privacy and confidentiality
  • Involve counselors, therapists, nurses and others as much as possible
  • Counsel about prevention of and provide treatment for urinary tract infections (click here)

FAMILY PLANNING
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Many persons with developmental disabilities or intellectual impairment are capable of raising and loving their own children. Allowing parents to raise their children, when at all possible, is usually better for the children and is usually cost-effective, even if they require more support services.

Recommendations for Physicians

  • Respect their choices regarding sexual expression, sexual orientation, social relationships, marriage and procreation/parenting
  • Respect their right to privacy and confidentiality
  • Educate and/or refer to counseling regarding birth control, marriage and family planning
  • Refer for genetic testing to detect if the etiology of the developmental disability is genetic; if so, refer for genetic counseling on risk of children inheriting same disability
  • Involve counselors, therapists, nurses and others as much as possible
  • Refer to parenting classes and support groups
  • Encourage interaction with other parents with disabilities
  • Refer to employment and housing services

Informed Consent

Informed consent should be obtained for exams, tests and procedures. Informed consent must be provided by the patient voluntarily; after the physician has made the patient understand all of the potential benefits, risks, alternatives, and consequences involved. It becomes especially important for long-term reproductive health decisions such as sterilization, abortion, and long-term contraceptive use (e.g., Norplant). Consent is achieved through a subjective process, not by a document or signature. Physicians should always provide sufficient information about what it is they are requesting consent for and assure the patient that he or she has a choice. While many persons with developmental disabilities are able to provide such consent, some may not be able to. This may make it difficult for them to receive the most appropriate care.

Parenting Challenges

Parents with disabilities face the same spectrum of challenges that any parent does. They may encounter additional challenges as a result of how they were treated as child or as a result of low socioeconomic status. Challenges may include:

  • Fear of children being taken away;
  • Insufficient stimulation for their children;
  • Overprotection;
  • Insufficient affection;
  • Abuse; and
  • Neglect.

Parenting Skills

Parents with disabilities may require additional support and training in order to function effectively as parents. Common needs include assistance and training in the following skills:

  • Infant care (bathing, feeding, diapering, etc.);
  • Adapting new ways to hold/feed/etc. because of a physical disability;
  • Understanding appropriate developmental expectations;
  • Handling discipline problems; and
  • Maintaining employment, housing, and money.

Additional support may be obtained from the following types of resources:

  • Parenting classes through community colleges;
  • Independent living skills training and parenting support groups;
  • Regional Centers; and
  • Early intervention/infant stimulation programs for offspring.

REFERENCES
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Peer-reviewed Journal Articles/Academies

American Academy of Pediatrics, Committee on Children with Disabilities. (1996). Sexuality Education of Children and Adolescents with Developmental Disabilities. Pediatrics, 97(2), 275-278.

American Academy of Pediatrics, Committee on Child Abuse and Neglect and Committee on Children with Disabilities. (2001). Sexuality Educaiton for Children with Disabilities. Pediatrics, 108, 508-512.

Carr, L.T. (1995). Sexuality and People with Learning Disabilities. British Journal of Nursing, 4(19), 1135-1141.

Keywood, K. (1998). Hobson’s Choice: Reproductive Choices for Women with Learning Disabilities. Medicine and Law, 17(2), 149-165.

Valenti-Hein, D., Dura, J. (1996). Sexuality and Sexual Development. In: Manual of Diagnosis and Professional Practice in Mental Retardation.

Special Interest Groups/Other Publications

Abuse and Neglect of Adults with Developmental Disabilities: A Public Health Priority for the State of California (2003).

Baxley, D.L. (2005). Sexuality Education for Children and Adolescents with Developmental disabilities: an Instructional Manual for Parents or Caregivers of Individual with Developmental Disabilities Retrieved on June 15, 2006.

Couwenhoven, T. (2001). Sexuality Education: Building a Foundation for Healthy Attitutdes, Disability Solutions, 5(6). Retrieved on June 15, 2006.

Fishman, M.E. et al. (1997). Collaborative Office rounds: Coninuing Education in the Psychosocial/Developmental Aspects of Child Health. Pediatrics, 99(5).

Hinsburger, D. (1995). Sexuality Update: Loving and Disability: Not Just Theoretical. The Habilitative Mental Healthcare Newsletter, 14(2).

Murphy, N.A., Elias, E.R. (2006). Council on Children with Disabilities: Sexuality of Children and Adolescents with Developmental Disabilities. Pediatrics, 118, 398-403.

National Information Center for Children and Youth with Disabilities. (1992). Sexuality Education for Children and Youth with Disabilities.” NICHCY News Digest #ND17. Accessed November 25, 1998.

National Information Center for Children and Youth with Disabilities (NICHY) (2005). NICHCY Connections…To Sexuality Education. Accessed July 1, 2008.

Valenti-Hein, D., Schwartz, L. (1995). The Sexual Abuse Interview for Those with Developmental Disabilities. James Stanfield Company. Santa Barbara: California.

Smith Consultant Group and McGowan Consultants. (1998). Sexuality Rights. In M.L. Snyder (Ed.) Health and Wellness Reference Guide (pp. 535-538). Neri Productions, State of Tennessee Commission on Compliance.

RESOURCES FOR FAMILIES
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American Society for Reproductive Medicine
205-978-5000

The Arc
800-433-5255

California Department of Developmental Services
916-654-1690

California Regional Centers
915-654-1958

Exceptional Parent Magazine
800-247-8080

Family Planning Council

Human Sexuality and Physical Disability Program, University of Minnesota
612-625-1500

March of Dimes Birth Defects Foundation
914-428-7100

National Information Center for Children and Youth with Disabilities (NICHY)
800-695-0285

The National Task Force on Abuse and Disabilities
310-391-2420

Planned Parenthood Affiliates of California

Planned Parenthood Federation of America, Inc.

ADVISORY COMMITTEE
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Theodore A. Kastner, M.D., M.S.
Felice Weber Parisi, M.D., M.P.H.
Joan M. Reese, M.D., M.P.H.
Patricia Samuelson, M.D.

PUBLICATION INFORMATION
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This document does not provide advice regarding medical diagnosis or treatment for any individual case, and any opinions or statements contained in this document are not intended to serve as a standard of medical care. Physicians are encouraged to view the considerations presented in this document in light of evolving scientific information. This document is not intended for use by the layperson. Reproduction of this document may be done with proper credit given to California Department of Developmental Services.

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