Preventing Unnecessary Seclusion Restraint in Schools Rocky

Preventing Unnecessary Seclusion & Restraint in Schools Rocky Nichols Executive Director Voice - 1 -877 -776 -1541; TDD – 1 -877 -335 -3725 www. drckansas. org; rocky@drckansas. org K-CART Conference, October 2010 Copyright 2002, Rocky Nichols

DRC: 1977 to today … • DRC private, 501 c 3 nonprofit corporation Independent of government and disability service providers • Official designated “Protection and Advocacy System” (P&A) for Kansas. • Federal P&A powers to investigate abuse & neglect of people with disabilities – access to the person, their records and the place where they receive services

DRC: 1977 to today … (cont. ) • DRC obtains justice through “disability rights advocacy” – litigation, advocacy representation, self advocacy support and information & referral. Attorneys and Advocates on staff to provide free legal representation or advocacy. • DRC’s Core Services: 1. Legally-based Disability Rights Advocacy 2. Public Policy Advocacy / Education of Policymakers 3. Education, Training and Outreach

Protection & Advocacy System (P&A) • Every state (and most territories) have a P&A. • Everything I have described that DRC does in Kansas, the P&A in your state does or can do. • P&As have attorneys and advocates on staff to do legallybased advocacy for individual clients. • P&As also educate the public and decision makers • Majority P&As are non-profit & separate from state govt. • To find your State’s P&A go to www. ndrn. org

DRC’s Growth in Core Services Training & Outreach 2003 17 846 2004 37 1810 2005 58 2215 2006 73 3710 2007 51 5105 2008 73 3131 2009 141 5503 Public Education, Media and Communication 2003 2004 2005 2006 2007 2008 2009 Total Since 2003 Radio/TV appearances Newspaper Articles Total Persons Getting Info 25 160 21. 8 m 63 149 32 m 16 26 8. 5 m 10 4 4. 5 m 2 110 9 359 9. 27 m 80. 82 Million FY 05 95% FY 06 95% FY 07 90% FY 08 95% FY 09 91% FY 06 102 780 204 FY 07 125 792 390 FY 08 115 965 377 FY 09 90 1216 299 Number Trainings Number Trained 2001 5 273 2002 6 203 10 13 1. 5 m 10 28 2. 8 m Outcomes on Customer Satisfaction Ratings FY 04 Overall Customer Satisfaction Rates 89% Legally-Based Disability Rights Advocacy Services Provided Legal Representation: Advocacy & Self-Advocacy: Information and Referrals: FY 03 4 260 623 FY 04 46 360 571 FY 05 87 798 295

Video Web Site www. drckansas. org/video. asp DRC’s Documentary DVD Video NEW Video Fliers (Voting, Special Ed, AT, Employment) DRC’s 30 th Anniversary Event Video On-line – all the speakers & excitement of DRC’s 30 th Anniversary Event!

Ks Guidelines Seclusion/Restraint Guidelines passed by State Board of Ed on the use of Seclusion and Restraint (S/R) in schools Advocates tried to get binding regulations – guidelines instead Structure and Definitions of the Guidelines are sound and based on prevailing national consensus on ways to limit use of S/R

Seclusion & Restraint in Schools – The Final Frontier Why are schools so important? Schools are literally the “Final Frontier” of places where seclusion and restraint are not always regulated. S/R is closely regulated in Kansas hospitals, PRTFs, long-term care facilities, intermediate care facilities, day care, etc. Kids spend the most time at school, but receive the least protection for the use of these dangerous tactics (S/R).

The Final Frontier Continued … Some states have limitations on the use by law or reg (use positive behavioral interventions, no locked seclusion, standards for use, size limits, etc. ) Kansas uses seclusion rooms and physical restraint in schools, but KSDE has non-binding guidelines Currently, no state or federal law governing S/R Bill has passed US House (introduced in US Senate) … will summarize that later.

Dangerous tactics, regulated elsewhere Many injuries & deaths due to S/R. 130 people in US died from 1999 to 2004 from S/R (source: HHS/CMS). Hartford Courant Paper – exposed problems in S/R http: //www. pcma. com/crisis_intervention_news/deadly_restraint/index. stm http: //www. pcma. com/crisis_intervention_news/deadly_restraint/faces. stm S/R is closely regulated and controlled in almost every other setting that youth with disabilities are served -- state hospitals, PRTFs, long-term care facilities, ICFs/MR, providers of services paid by SRS, etc … why not schools? Why do we allow the place where children spend the most time (schools) be the place where they get the least protection? 2009 GAO Report found “hundreds of cases” of abuse and death related to S/R. GAO found no data collection, no federal restrictions, and “widely divergent” state protections

“Matthew Goodman, a teen with autism, spent the last 16 months of his life heavily sedated, in arm splints and a helmet, in New Jersey. The restraints were supposed to keep him from picking at an injury, but his mother believes they contributed to his death at age 14. ” – Columbus Dispatch 4/24/2005 130 S/R deaths from 1999 to 2004. www. pcma. com/crisis_intervention_news/deadly_restraint/faces. stm

Harm of S/R in Schools Cedric Napoleon - Texas death 12

Harm of S/R in Schools Jonathan King – Georgia death 13

Harm of S/R in Schools Seclusion Room in Tennessee 14

Harm of S/R in Schools Kansas Examples Matthew, a child with cerebral palsy in Scott City, Ks, was secluded in a restroom with a toilet for days, where he was forced to eat and do his work. His mom was forced to change schools to protect her son. A Salina parent reported that their child was locked in a dog kennel as a form of seclusion. KSDE refused to investigate, claiming its outside the scope of their regulations and no federal standards exist. School personnel strap Ian, a child with Autism in Cheney, in his stiff wooden chair to keep him from fidgeting. He’s forced to watch the other kids play. His parents are never told and find out by sheer will.

Harm of S/R in Schools Kansas Examples (cont. ) An Emporia child on the Autism spectrum spends up to 5 hours a day in seclusion, 4 days a week. Zach, a child with disabilities in Chanute, Ks, was injured by an untrained aid with an improper hold. A Doctor at KU Med Center writes to a school in Johnson County to stop putting a child with PTSD in a seclusion room because it worsens his emotional disabilities. The school increases its use after receiving the letter. The family is forced to move to a different school district to stop the abuse.

Harm of S/R Staff get hurt, too. Assumption – R& S keep staff safe, but the opposite is true Data isn’t tracked in schools, but for every 100 mental health aides, 26 injuries reported do to use of S/R (1996 survey) This makes it a more dangerous job than lumber, construction & mining

Growing National Consensus to Limit S/R This consensus needs to extend to schools President’s New Freedom Initiative “. . . Seclusion and restraint are safety interventions of last resort; they are not treatment interventions. In light of the potentially serious consequences, seclusion and restraint should be used only when an imminent risk of danger to the individual or others exists and no other safe, effective intervention is possible. ” Federal Govt / HHS Official Policy – S/R must be dramatically reduced & eventually eliminated.

Growing National Consensus on S/R Child Health Act of 2000 – limits use of seclusion and restraint to “emergency” situations for young people up to age 21 in public facilities and other settings. National State Mental Health Program Directors Position – “seclusion and restraints, including ‘chemical restraints, ’ are safety interventions of last resort and are not treatment interventions. Seclusion and restraint should never be used for the purposes of discipline, coercion, or staff convenience, or as a replacement for adequate levels of staff or active treatment. ” Many other states have adopted similar regulations limiting S/R in schools, regardless of party or ideology (conservative Texas, moderate – Maine - and liberal states – Massachusetts.

Growing National Consensus on S/R American Psychological Assoc. (APA), American Medical Assoc. (AMA), American Academy of Pediatrics (AAP), American Academy of Child and Adolescent Psychology (AACAP) International Society of Psychiatric-Mental Health Nurses (ISPN) All these groups say that restraint should be a tactic of last resort and as emergency interventions to maintain safety (try least restrictive first) All call for staff training, etc.

Growing National Consensus on S/R Autism National Committee – call on Congress and State Legislatures to limit restraint on children w/ disabilities (brief, emergencies only involving serious threat of injury to self or others, etc. ). Recommended standardized reporting procedure. Child Welfare League of America – call for minimum national standard on training, research on crisis prevention models, etc.

Examples of minimum elements and components of effective S/R proposals (concepts in Ks Guidelines): Use S/R only when Danger to self or others Threshold for S/R use: “imminent risk of physical harm to self or others. ” This means: immediate and impending threat of a person causing substantial physical injury to self or others Outlaw mechanical and chemical restraint Mechanical restraint – any device or object used to limit a person’s movement Exception- that a protective or stabilizing device ordered by a licensed professional or required by law (used as it is intended) is not considered mechanical restraint

Key Minimum elements continued … Use of S/R/ is an intervention of last resort, other interventions must be tried first Restraint is a safety intervention only - not treatment or educational intervention Establish right in law to be free from unreasonable, unsafe, & unwarranted use of S/R Use of Seclusion must be detailed and signed off on in IEP/BIP S/R not to be used unless other less restrictive behavior intervention strategies identified in IEP/BIP implemented and were ineffective Don’t use S/R when there’s a medical contraindication

Key Minimum Elements Continued… Require staff training prior to use of S/R Require staff to observe and hear the student while in the Seclusion room Prohibit locked seclusion rooms Require parental notification of S/R Require tracking of the numbers of incidences of S/R (for trends and data to impact future policies)

Key Minimum Elements Continued… Joseph Ryan & Reece Peterson (University of Nebraska at Lincoln), Physical Restraint in Schools 2003, found that basic elements of Restraint law/reg includes: Definitions of terms Requirements for staff training Standards/thresholds when Restraint can be applied Reporting Requirements

Key Minimum Elements Continued… NDRN S/R Committee Guiding Principles: School-wide use of positive behavioral supports (PBS) and well trained staff S/R = measures of last resort; only for emergency & substantial threat of serious harm to self and others. Not therapeutic interventions, safety interventions. Training of staff (PBS, safe use, etc. ) Constant supervision of S/R during & after use Staff must follow specific policies Use of S/R is a failure of the schools PBS system On-going Goal = reduction of S/R & improve PBS Don’t use when medical contraindication Parents must play an integral role Notify parents

Considerations When Developing Effective S/R Policy Minimal Characteristics of Seclusion room Maximum time limit in seclusion room? (National pediatric standard of 1 minute for each year of the child? ) Procedure to document the justification for S/R? Size limits? - many states have 50 square feet minimum for Seclusion rooms Type of lighting, cooling, etc (same as other rooms? ) What post-documentation required after S/R? Altercation exception to S/R for staff training? Require Positive Behavior Supports or other alternatives? How is policy enforced? Which students to include in policy (all students, students w IEPs)?

Making Kansas Guidelines “Binding” through IEP Kansas Guidelines on S/R are effective, but not binding Make guidelines “binding” by attaching them to IEP Spell out in IEP that the KSDE Guidelines will be used in regards to S/R for that child We would rather not have IEP deal with S/R (safety interventions, not educational interventions), but IEP is only way in Kansas Take the S/R guidelines to next IEP team meeting. Make these the standards and limitations regarding S/R for that child. Effective Definitions. Based on prevailing standards.

Summary of US House S/R Bill – H. R. 4247 HR 4247 passed bi-partisan vote (262 -153) Congress appropriates $56. 7 billion to K-12, but NO protections against S/R for children Extends Child Health Act of 2000 to schools Entirely prohibits the most dangerous tactics: mechanical restraint, chemical restrain, physical restraint that restricts breathing & many aversive behavioral interventions Provides grants for Positive Behavior Supports (focus on PBS, not S/R).

Summary of US House S/R Bill – H. R. 4247 (cont. ) Follows national consensus to limit S/R. Can’t be used unless: Imminent danger of physical injury to the student, staff or others Less restrictive interventions would be ineffective Staff members are properly trained on the use of these tactics (with an exception for emergencies) Requires that physical restraint of seclusion end when imminent danger ceases For the first time ever, USDE will collect data on the use of these tactics Makes schools notify parents when these tactics are used on their kids Does not prohibit “time out” that is not otherwise S/R

Differences with US Senate S/R Bill – S. 3895 Has not yet passed the Senate (in Senate HELP Committee) Bi-Partisan – Dodd (Dem-Conn. ); Burr (Rep-NC) NO Senator from Kansas has co-sponsored … YET Also follows consensus to limit S/R, with some adjustments: Makes it clear Seclusion includes locked or unlocked rooms Standard of when you can use S/R is stronger than House version – Imminent danger of “serious bodily injury” to the student, staff or others. Fed law defines this as: (A) a substantial risk of death; (B) extreme physical pain; (C) protracted and obvious disfigurement; or (D) protracted loss or impairment of the function of a bodily member, organ, or mental faculty

Differences with US Senate S/R Bill – S. 3895 Allows S/R to be written into the IEP, with limitations: Must otherwise comply with other standards of the bill (including higher definition of serious bodily injury); Must have documented history prior 2 years where student created imminent danger of serious bodily injury; Must have a FBA (functional behavior assessment) & BIP (Behavior Intervention Plan) implemented prior to IEP lang Requires a “debriefing” post incident between school staff and parents to review the FBA & BIP (as it failed). Stronger provisions & funding to promote the use of PBS (changes to ESEA). Otherwise, Senate version similar to House bill

If you want to find out more info from our US Senators on the S/R bills or ask Questions… Senator Sam Brownback: Contact the Staffer assigned to Education issues: La Rochelle Young Larochelle_young@brownback. senate. gov (202) 224 -6521 Senator Pat Roberts: Contact the Staffer assigned to Education issues: Melissa Kay Melissa_Kay@roberts. senate. gov (202) 224 -4774

How can you help? Find Partners to Support S/R efforts … In addition to usual suspects, reach out to: Pediatricians, Medical Associations (APA, AMA, AAP, AACAP, ISPN, etc. ) State Agencies School Teachers Special Education Directors Law Enforcement Judges Others?

Other Potential Partners … NAMI State Chapters (NAMI official position is in support of restricting S/R in schools) Provider and Advocacy Organizations (ILCs, DD providers, MH providers, etc. . – some of these are already subject to far stricter limitations, and understand why need to extend to schools) Autism Societies Enlightened teachers, special educators, etc Training Organizations on safe use of S/R

• Crafting a message is key to developing any public policy … This exercise shows a tool to craft a message that forces you to look at the issue from all angles. • Message Development is a critical step that most of us forget about • Will teach you a simple message development tool that forces you to look at a message from all angles • Before you write that letter or pick up the phone, THINK and develop your message

A message is NOT the entire letter you write. Message is NOT an issue Message is NOT a slogan Message is NOT a strategy A message IS the POINT you want to get across when people read your letter.

• It’s better to figure out THE POINT you want to convey, and then write the letter or make the call. • Have a point and get to the point. • Warning: Message Development should never be an excuse to put off writing the letter or making the phone call. • Only takes 2 to 5 minutes to do this Message Box exercise.

If you use this simple, yet powerful Message Box tool before you take action you can have a message that is more: CLEAR CONCISE CONTRASTIVE CONVINCING

What you say about your position What they say about your position What you say about them What they say about their position + - +

Usually people only look at one issue from their ANGLE. The following message box exercise (on S/R in schools) provides you a more complete message. WHY? : 1. Forces you to write down your points and look at your message from ALL ANGLES (all four points of view). 2. Forces you to look at your own weaknesses in your argument. 3. Allows you to use mental JUDO to make your message stronger (take their strengths and weaknesses into account, use against them).

What you say + about your stand: Accountability; National Consensus; Safety & certainty for students & teachers; Dangerous Tactics; Studies & Research; Fundamental rights issue. + - What you say – about their stand: When did schools ever ask for greater accountability? ; How much money are we spending on schools again? ; Ask people in Mississippi what local control means / local control = loss of civil rights; The schools standards are not enforceable = no change. What they say – about your stand: Red Tape; More bureaucracy; Costs untold $; Where get $? ; Where’s the problem? ; Another burden on teachers; Focus on classroom, not red tape + What they say + about their stand: Local control; Let local elected officials decide the standard; Many schools have already adopted standards and guidelines; Trust and support schools;

• Once you have the message box filled out, then look for strengths and weaknesses • Your Message (or POINT) = no more than a few sentences (think of it like a TV or radio ad, or a paragraph) • When you have your MESSAGE or POINT - then you can write the letter or make the phone call with a fully developed message (vetted by the message box).

Message - Seclusion Restraint (S/R) in School (based on message box tool) • “This S/R bill is about keeping both school children and teachers safe. Having certain and clear standards protects children, teachers and schools. Without standards, proper training and reporting of these dangerous tactics then the whole system is at risk. Schools are at risk of not having an enforceable, clear standard, children are at risk of serious injury or death, and schools & teachers are at risk of litigation. This bill ensures accountability of the billions of our hard-earned tax dollars that schools are spending. These are common-sense accountability measures based on the growing national consensus on S/R. These are things schools should be doing anyway, so the costs will be minimal. ” • This may not be word for word exactly what you say … it is the overall point you want people to walk away with after hearing what you say on seclusion and restraint.

Media Strategies Find Parents with compelling stories Help parents craft their message to the media vs. message to policy makers All Politics is Local – Applies to Many Media Stories Local Angle with parents with compelling stories more effective

More Ideas for Media Outreach Snowball effect Big Bang #1 Have a public hearing or controlled town-hall meeting and repeat above. Any Port in a Storm Have a big media event with several parents from major markets. Get statehouse beat reporters to cover the statewide and local angle. Big Bang # 2 Get different media stories in different outlets. These snowballs can create an avalanche of media. Sometimes you can only get one dedicated reporter to bite on the issue. Develop the relationship to turn the one story into a series of stories. Build credibility to get other outlets to want to cover the story. Remember to include T. V. – not just print media Activism from Grassroots – get parents to testify at local school boards … build support from the ground up. Have parents write letters to editor Panel discussion on S/R Write a policy paper outlining issues

Preventing Unnecessary Seclusion & Restraint in Schools Rocky Nichols Executive Director Voice - 1 -877 -776 -1541; TDD – 1 -877 -335 -3725 www. drckansas. org; rocky@drckansas. org K-CART Conference, October 2010 Copyright 2002, Rocky Nichols