Investigative report regarding the Ashley Treatment

Executive Summary 1

Washington Protection and Advocacy System & the National Disability Rights Network 5

I.Introduction 6

II. Methodology of Investigation 8

A. Documents Requested and Reviewed 8

B. Witnesses Interviewed 10

C. Medical Expert Consultation 10

III. Facts 11

A. Ashley’s Parents Wanted to Keep Her Childlike 11

B. Ashley’s Parents Sought Children’s Hospital Ethics Committee Opinions and Recommendations Regarding the “Ashley Treatment” 12

C. No Court Order Was Sought or Obtained to Authorize the Treatment, Including the Hysterectomy 14

D. Insurance and Billing 15

E. Disciplinary and Corrective Action 15

IV. Relevant Legal Requirements 15

A. Constitutional Rights: Privacy and Liberty Interests 16

1. Privacy and Liberty Interests Generally 16

2. Legal Requirements Regarding Treatment Decisions for Adults Who Are Not Competent To Give Informed Consent and for Minors 17

B. Was A Court Order Required Before the “Ashley Treatment” was Implemented for Ashley? 21

1. The Hysterectomy 22

2. Breast Bud Removal and Hormone Therapy as Part of the “Ashley Treatment” 24

3. Discrimination Against Individuals Based Upon Their Disabilities 24

V. Corrective Actions and Other Systemic Reforms to Protect the Legal Rights of Individuals with Developmental Disabilities for Whom Sterilization and Growth-limiting Interventions are Sought 25

A. Implementation of Policy and Procedure on Growth-Limiting Medical Interventions 25

B. Corrective Actions 26

C. No Sterilizations Without Court Order 26

D. Ethics Committee Membership 27

VI. Conclusion 27

VII. Appendices 29

Appendix I: Documents 29

Appendix II: Legal Authorities 31