Transcript Legislative and Policymaking Issus on Seclusion and

Preventing Unnecessary
Seclusion & Restraint in Schools
Rocky Nichols
Executive Director
Voice - 1-877-776-1541; TDD – 1-877-335-3725
www.drckansas.org; [email protected]
K-CART Conference, October 2010
Copyright 2002, Rocky Nichols
DRC: 1977 to today …
• DRC private, 501c3 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
21.8m
63
149
32m
16
26
8.5m
10
4
4.5m
2
110
9
359
9.27m 80.82 Million
FY 05
95%
FY 06
95%
FY 07
90%
FY 08
95%
FY 09
91%
FY06
102
780
204
FY07
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
1.5m
10
28
2.8m
Outcomes on Customer Satisfaction Ratings
FY 04
Overall Customer Satisfaction Rates
89%
Legally-Based Disability Rights Advocacy Services
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/video.asp
DRC’s Documentary DVD Video
NEW Video Fliers (Voting, Special Ed, AT, Employment)
DRC’s 30th Anniversary Event Video On-line – all the
speakers & excitement of DRC’s 30th Anniversary Event!
Ks Guidelines Seclusion/Restraint
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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 …
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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
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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

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“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
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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.)
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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
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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
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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
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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)
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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):
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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

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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 …

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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
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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…
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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

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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:

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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:
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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
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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?
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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
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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

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Differences with US Senate S/R Bill – S. 3895
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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:

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(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:

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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

[email protected]
 (202) 224-6521


Senator Pat Roberts:
Contact the Staffer assigned to Education issues:
 Melissa Kay

[email protected]
 (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 …
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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; [email protected]
K-CART Conference, October 2010
Copyright 2002, Rocky Nichols