Building a Coalition to End the Inappropriate Use of Seclusion & Restraints on Children Children Come First Conference Wisconsin Dells, WI November 16, 2009

Presentation Overview  Seclusion/Restraint Coalition  Wisconsin S/R Issues  Initial Coalition Activities  Current Coalition Efforts  Future Plans

Seclusion/Restraint Coalition   vv  Vv  Other groups

Genesis of the Coalition  Individual groups push DHS for S/R summit  No consensus on “restraint” at follow-up meeting  Request for moratorium on holds that restrict breathing—finally granted by DHS and DCF  DHS initiates S/R Practice workgroup Angie’s death

Wisconsin S/R Issues  Families seeking help related to use of S/R with their children  Media reports of S/R incidents causing injury or death to students  DPI Guidelines for the Appropriate Use of Seclusion & Physical Restraint in Special Education Programs  WI Patients’ Rights law not updated since 1970’s  WI has no statute or admin. code relating to S/R in special ed. programs; previous attempts to pass have failed  Need to build a coordinated, grassroots effort

Initial Coalition Activities  Requested Legislative Council Study on S/R  Requested appointment to Special Committee on School Safety  Distributed surveys to collect “Stories”  Developed brochure & display  Planned booklet contents  Researched literature, case law & legislation

Surveys  Surveys widely distributed to collect “stories”  Spanish option  Confidentiality  Surveys revised  Raised awareness  Increased requests for help

Surveys  Type? (physical or chemical restraint, seclusion)  Setting? (school, treatment facility, both)  When occurred? Age of child at the time?  Part of IEP or Behavior Intervention Plan?  Details? (Frequency, length, location, staff involved)  Any documentation? Measurement of impact?  Written policy about S/R in place?  How & when were you informed S/R was used?  How did your child feel when he/she was S/R?

Awareness Brochure What do Seclusion & Restraint mean? Are there laws about S/R in WI schools? What do DPI Guidelines state that school districts should do? DPI Guidelines for Seclusion DPI Guidelines for Restraint Who is affected by S/R practices? Resources for more information Seclusion and Restraint in Wisconsin Schools: Information for Parents

These organizations have formed an initiative to promote a safe environment for children and staff through education and legislation related to the use of seclusion and restraint in Wisconsin schools and institutions. Please share your story! If you, or someone you know, has a child that has experienced seclusion and or restraint, whether it was used effectively or ineffectively, we would like to gain a better understanding about your experiences. Making the problem known

Tragic results WHY IS CHANGE NEEDED? ANGELLIKA – Age 7 “Her death was a homicide caused by ‘complications of chest compression asphyxiation arrest while restrained by another person’” (Capitol Times, 2006)

Inappropriate use of Medical Equipment WHY IS CHANGE NEEDED? Zachary – Age 3 Zachary, a 3 year old with autism attended an early childhood program at a public elementary school. Zachary’s mother, Hasmig, didn’t know her son was being restrained in Rifton Chair. “the use of such mechanical restraint was not in Zachary’s IEP, nor was it ever discussed with her. Both of these are apparent violations of DPI guidelines” (620 WTMJ, 2007)

Out of Darkness…Into the Light  Target audience: legislators  Stories  Research on literature, case law, legislation in WI & other states  Recommendations

Story examples:  Justin  Jenna  Teague  Frank  Many more Report - Stories

Report – Research Section  Introduction  Federal Law  State Laws/Regulations 20 states  WI Guidelines/Best Practices  Why WI Corporal Punishment Law Not Effective in Regulating S/R in Schools  WI S/R Law for Hospitals & Health Care Facilities  WI S/R Law Regarding Children in Juvenile Detention Facilities & on Community Supervision  Conclusion

Current Coalition Efforts  Agreement on goals and process Secure legislation to improve public policy related to the inappropriate use of S/R for schools & community based treatment facilities. Continuing education on appropriate use of S/R Seek common ground with other stakeholders Distribute Out of Darkness…Into the Light

Current Coalition Efforts  Stakeholder viewpoints & efforts Position statements – many overlapping areas of agreement Meetings to seek common ground 2008 School Power Point training  32 slides -2 hour training on “WDPI Best Practices” & “WCASS Position Paper”  Assurance that all staff in every WI school will be trained annually  Outcome data?

Guidelines for Appropriate Use of Seclusion & Restraint in Special Education Programs Developed by WCASS with the Cooperation of SAA, AWSA, WASDA, WEAC, and WDPI

Current Coalition Efforts  Coalition Agreement on Requirements for the Use of S/R  Shared our information with national organizations and Congress for federal legislation  Seeking other stakeholders  Distribute Out of Darkness…Into the Light available on line: ghtswi.org/archives/2 96#more ghtswi.org/archives/2 96#more-296  Seek legislative support for bill

Positive Behavior Intervention and Support (PBIS)  School-wide approach to providing positive intervention with students instead of negative discipline  DPI web site had information 

Bill drafted  Rep. Sandy Pasch is sponsoring a bill which the coalition wrote. Sen. Julie Lassa is sponsoring a companion bill.  It is currently being circulated for co- sponsors. It focuses on PBIS, reducing use of seclusion and restraint, making it safer when it is used, and communicating with parents in a clear and effective manner.  Concerned parents need to contact legislators to encourage them to co- sponsor LRB 2425.

Legislative Process  Once the bill has co-sponsors, it will get a bill number and eventually a committee hearing.  It will be very important for parents of kids who have been secluded and restrained to come to Madison to testify at the hearing, or if they cannot, to share their stories in writing with committee members and their legislators.

Contact your legislators  If you know who your legislators are, contact each one (Assembly and Senate) to express your concerns about Wisconsin having no laws on seclusion and restraint.  If you’re unsure who your legislators are, you can check on-line: aml/waml.aspx, or by phone: aml/waml.aspx

Contact Information  Disability Rights WI  WI Family Ties  WI FACETS