How to Build Intensive Behavior Supports into a Self-Directed LifeRobyn Schneider, Darlene Magito McLaughlin, Theresa Giacobbe-Grieco, Jackie Gates, Barbara McNamara, & John Innis

Introduction• The value of real people and real stories

Prevention of Problem Behavior

Stage 1: Primary Prevention “Universal Strategies”• Lifestyle Enhancement• Alter Environments• Consequence-based Strategies• Skill-building

Lifestyle Enhancement• Person centered planning• Choice of DSP/activities• Privacy• Health & wellness• Special events• Jobs & valued roles• School & community involvement• Relationships

Alter Environments• Activity schedules• Embedding & behavioral momentum• Extra supervision & support for learning• Change settings (remove causes, triggers)• Rapport building• Mood enhancement

Consequence-based Strategies• Schedules of Reinforcement• Identify highest-priority target• Select valuable rewards• Favorite things/items• Preferred activities & experiences• “Free passes”• Attention & praise• Money & tokens

Skill-building• Life skills• Communication skills• Coping skills

Life Skills• Academic skills• Friendship/social skills• Recreation/leisure skills• Vocational skills• Preferred competencies

Communication Skills• Express pain/discomfort• Express desire to leave an unpleasant situation• Express desire for social interaction• Express desire for activities/things• Express desire for sensations/stimulation• Convey choice or preference

Coping skills• Overcoming fears• Learning “time and place”• Problem solving• Relaxation• Self-monitoring• Exercise

Stage 2: Secondary Prevention for Individuals “At Risk”

• The importance of safety• Recognizing “warning signs”• Having a plan

AUTISM-WANDERING STATISTICS

• 48% of children with an ASD attempt to elope from a safe environment, a rate nearly four times higher than their unaffected siblings

• In 2009, 2010, and 2011, accidental drowning accounted for 91% total U.S. deaths reported in children with an ASD ages 14 and younger subsequent to wandering/elopement

• More than one third of children with ASD who wander/elope are never or rarely able to communicate their name, address, or phone number

• Wandering was ranked among the most stressful ASD behaviors by 58% of parents

(National Autism Association, Lethal Outcomes in ASD Wandering, 2012).

Wandering/Elopement• 62% of families of children who elope were prevented from

attending/enjoying activities outside the home due to fear of wandering

• 40% of parents had suffered sleep disruption due to fear of elopement

• Half of families with children who wander report they had never received advice or guidance about elopement from a professional Only 19% had received such support from a psychologist or mental health professional

• Only 14% had received guidance from their pediatrician or another physician

(Interactive Autism Network Research Report: Elopement and Wandering (2011); National Autism Association, Lethal Outcomes in ASD Wandering, 2012).

Safety and Well Being• Safety and Well Being-what we all want for our children

regardless of if they are typically developing or are challenged with a disability.

• Our experiences as Parents, Family Members, Teachers and Support Staff have shaped how we teach and react to situations involving safety.

• Safety concerns can fall into every single broad category of everyday life.

• For the purposes of this training we will be focusing on the most common areas of concern.

Where to Begin?• You are here at this presentation so use it as an opportunity to add to your

safety and emergency preparedness repertoire.• Get ideas from others, share resources• Start by printing one of the several Manuals listed in the resources section

and use it as a checklist and teaching tool.• Make everyday an opportunity for incidental teaching.• Movies-Fire safety, Stranger Awareness, Wandering• Visiting a Friend- Pool Safety, Self-Protection, Emergency Preparedness

SAFETY CONCERNS• ALL parents have safety concerns when it comes to their

children• Since people with disabilities are at a higher risk of being hurt,

victimized or wandering off they need to have a plan put in place to evaluate the different areas of risk

• It is an anxiety producing subject but it is a dialogue we must have

Physical and Sexual Abuse• Nonverbal teens are at high risk of physical and sexual abuse

because of their perceived inability to communicate. • The abuse rate for children with a developmental disability is 3.4

times the rate of children without disabilities (Boystown, 2001, Patricia Sullivan).

• Use programs like Circles, Intimacy and Relationships by Champagne & Hirsch that teach about “not keeping secrets from certain circle members” and “different types of touch)

• Update charts in Circles or similar programs and laminate for daily use.

• Remember to “Take it out to the community” Don’t rely solely on video, social stories, lessons and books.

• Circle should share social stories and other visual materials.• Request your local Library to buy one of the recommended

programs.

Emergency Preparedness• The Emergency Preparedness Training/Workshops are

comprehensive and based on and adapted from California’s “Feeling Safe, Being Safe” program.

• The program is appropriate for all self-determined individuals, their families and the people who support them.

Our PBS-CF Emergency Preparedness Training/Workshops

• The training seeks to assist young adult and adult individuals that are self-determined and living in their community in developing a plan for staying safe.

• In light of what many of us experienced as a result of Super Storm Sandy, it has become evident that many of us were not fully prepared for being evacuated or to live without electricity or cell phone communication.

• Many were traumatized because of so many changes to their everyday life.

• L.I parents have all types of stories of not feeling prepared to live without electricity and how it affected their children.

The Workshops• Instruction about important procedures and protocols for

before, during and after a disaster are presented in an interactive and “hands on” manner.

• Individuals with disabilities get to “build” their own backpacks and fill out information sheets with the support of staff or family members.

• Flashlights, whistles and First aid kits are discussed, used and common items that you will find on your supply list are brought into training.

Where?• PBS-CF trainings are given at libraries and cost-free locations

throughout Long Island as dictated by grant funding.• Please see the PBS-CF website at

www.pbscommunityfoundation.org for a copy of materials or dates of upcoming workshops.

N.A.S. “Big Red Toolkit” & A.S “Safe Signals”

• The National Autism Society has put together a comprehensive tool kit which includes, social stories, Stop Sign Prompts, Picture schedules (In addition a new Transition toolkit has been released)

• It is recommended that parent’s and teachers download and print and use as a workbook.• http://nationalautismassociation.org/docs/BigRedSafetyToolkit.pdf

• A wonderful resource for classroom teachers is the “Safe Signals” manual & video which was developed by Ohio State Medical Center through a grant from Autism Speaks. It is has detailed picture and written lessons for most home safety situations. It also includes teaching strategies and behavioral suggestions for implementing lesson plans.• https://www.autismspeaks.org/family-services/autism-safety-project/in-home

(National Autism Society, 2015)

Let’s be a safe Community• As Parents, Educators, Self Advocates and as a community, we

need to share resources.• Make Health & Safety a priority and subject at every CSE,

Circle Meeting, Person Centered Planning Initiative, and as an integral part of Life Skills Training and Transition Planning.

Brochures and Pamphlets• Collect from Fire Stations, Libraries, Police Station Vestibules,

Government Buildings and Recreation Centers.• Many are written in short and colorful formats and are often

listed out like a Task Analysis.• These can be used as short lessons in class or at home. Many

organizations will order you additional ones at no charge.

Wandering Prevention

• Practice In the Community• Practice safety scenarios while in malls and other public places. • E.g., “What would you do if all of a sudden I was gone, would you

stay in same place till I got back?” • Rehearse who would you go up to? Can you use your cell phone?

Can you hand someone a card? • Consider exploring the many options of bracelets, electronic

devices, temporary tattoos and GPS systems.• Walk a person’s community with them, outline where they like to

go. • Many “incidents of wandering” are actually instances of a person

not being able to communicate where they want to go.

Self-Protection Against Abuse

• Practice At Home• Reinforce the messages about not keeping secrets from parents,

keep up a culture of respect and personal space. • Show appropriate videos and use stories and picture messages

where appropriate. • Begin to introduce the concept of self-advocacy and self-worth. • Bring it up during shower time and during family gatherings.

• Practice In the Community• Have the discussion during doctors appointments, have DSP’s

reinforce the concept during their time spent with the person. • Consider testing out if a person asks someone to keep a secret. • List out times when it may be appropriate to “keep a secret” and

the difference between telling someone else’s “personal information”.

• Use pictures and concrete examples.

Safety Within Social Relationships

• In a 2013 study, 50% of young people with disabilities self-reported that they sometimes felt lonely • Of those people who reported feeling lonely, 1 in 3 found it

difficult to make friends • Challenges with friendships often make people in self-

direction at a higher risk for developing unhealthy or inappropriate relationships

• Much of the work we do with self-directed folks and staff include learning the skills to be a good friend and to have healthy relationships with same sex and opposite sex people

Amando, Stancliffe, McCarron & McCallion (2013)

Drowning Prevention & Water Safety

• Practice At Home• Take advantage of the safety quiz’s and brochures put out by the Y and other

organizations. • Develop plans around swim and pool safety in March and April before most home

pools are open. • Many Y’s and JCC’s offer Adult swimming. Speak to your DSP’s about swimming

ability.• Do you feel safe with your adult child walking out onto decks and piers? What are

guidelines for friend’s parties?• Practice In the Community• Outfit your pool with lifesaving devices, a safe spot for a phone, appropriate

alarms as well as all outdoor exits from house, visit pools, beaches and other bodies of water with your own clear rules or picture schedules.

• Consider finding DSP’s for swimming lessons who have a WSI and have them come to your house.

• Young Adults with ASD and other disabilities should learn while visiting and going to parties, information about their swimming abilities or any medical conditions like seizure disorders can discretely be shared verbally or by note.

Safety and Independent Living• At some point, most young people want to stay home alone• Conduct functional environment assessments• Create protocols for when to answer the door, what information

to give out on the phone, how to use an alarm system• When assessing a person’s safety when living in their own

apartment, use life skills checklists as well as functional evaluations

Traffic Safety and Travel Training

• Practice At Home• DSP’s should review a person’s skills when it comes to

traveling safely. • People we support range from needing 1 on 1 DSP’s not

more than a few feet away to folks who drive and travel totally independently.

• A plan needs to be implemented starting with the home, including walking pets, relationships with neighbors, traffic pattern in driveway, bike riding and walking to friends.

Traffic Safety and Travel Training

• Practice In the Community• Make the parking lot your “Classroom of Life”, practice

looking at lights of cars backing up, cross streets with lights, use life skills checklists to identify dangerous patterns.

• Older students can have their driving readiness evaluated by Access VR or private community driving schools.

• Self-Directed people who eventually drive should have a plan for being pulled over, see brochure “What to do when stopped by police” from the SCPD.

• It is also useful to have a Task Analysis like list of what to do in case of an accident.

Internet and Social Media Safety

• http://kids.usa.gov/teachers/lesson-plans/online-safety/index.shtml has functional lesson plans, interesting interactive games on safety and age appropriate real life stories.

• Practice answering the phone and not giving out pertinent information or credit card information

• In the Community• Keep the computer in a well trafficked area, discuss social media sites as

a family well before giving permission to access. • Learn about parental controls. • For some older young adults with ASD, a closed social media site might

be a wise alternative.• New Developments in closed social media sites are currently being

developed.

RESOURCES

• GENERAL RESOURCES • National Autism Association: nationalautism.org • AWAARE Collaboration: awaare.org• NAA Autism Safety: autismsafety.org• Autism Speaks Safety Project:

autismsafetyproject.org • SWIMMING LESSONS • YMCA Listing nationalautism.org• Super Swimmers superswimmersfoundation.org

• CHILD SAFETY PRODUCTS • NAA’s Big Red Safety Shop: nationalautism.org

RESOURCES

• SERVICE DOGS • Blessings Unleashed blessingsunleashed.org • 4 Paws for Ability 4pawsforability.org

• FOR FIRST RESPONDERS & CAREGIVERS • Reverse 911 www.achildismissing.org• National Center For Missing And Exploited Children

missingkids.com • 1-800-THE-LOST Autism Risk Management

autismriskmanagement.com• The Law Enforcement Awareness Network leanonus.org• Autism Alliance for Local Emergency Responder Training

autismalert.org• Take Me Home autism-society.org

RESOURCES• TRACKING SYSTEMS & ID PRODUCTS • Project Lifesaver projectlifesaver.org • LoJack SafetyNet lojacksafetynet.com• Caretrak Systems: caretrak.com • Alzheimer’s Comfort Zone: alz.org Medic Alert medicalert.org • Road ID roadid.com

Balance• For all young adults, teach towards finding balance and

looking towards new experiences and challenges.• “In the past, we found clever ways to build avoidance of risk

into the lives of persons living with disabilities. Now we must work equally hard to help find the proper amount of risk people have the right to take. We have learned that there can be healthy development in risk taking... and there can be crippling indignity in safety!”

• Robert Perske

Safety, At What Price?• The Danger of Eliminating all Risk• Never allowing an Individual to take chances or try new

activities• Taking away basic Human Rights• Isolating an Individual from his or her whole community

OUR CHALLENGE• Our Challenge, as Parents, Families and Educators is to teach

safety skill sets to self-directed young adults throughout the span of their life

• This must be done systematically both at home and in the community and be tracked and documented

• They must coordinate with the Self-Directed Plan and Valued Outcomes

• These skills will prepare them as adults to live a fully included life in their communities where prudent risk taking can be a choice

Think About it

• The Risk of Dignity• The Dignity of Risk…

The Self-Direction Plan• “But I don’t need a behavior specialist or clinician? My child

doesn’t have behaviors!”• Connecting the circle and the clinician• IDGS resources• Clinician non-direct services• Definition of behavior• In general, behavior is the activity of living organisms.• Can include everything from cooking to picking up the phone and

calling a friend• The general public very often think behaviors are something bad

or negative• The circle of support looks at anything that works for a person

and helps them to be more connected to a community as well as what behaviors do not work for a person and can be a barrier

Role of the clinician• What does a clinician really do on a plan?• The clinician will assess the individual and their environment• The clinician will prepare the “Services to be Delivered”

document• Clinician will review the Hab plan• The clinician will work with the individual and the staff to best

support in all areas for the community and home• The clinician will train self-directed staff

Stage 3: Tertiary Preventionfor “High Risk” Crises • What constitutes a crisis?• What resources are available?

Identifying a Crisis• Type of behavior• Dangerous self-injury and/or aggression towards others• Intense property destruction• Any behavior that constitutes creating a safety risk for the

individual or others in environment• Frequency, intensity, risk• Poor response to intervention• Application of primary and secondary strategies do not impact

the behavior

Crisis Resources• 911 (police, hospital)• Mobile Crisis Team (OPWDD)• Intensive Behavioral Services (OPWDD)• Article 16 clinics (OPWDD)• Health Insurance Panels (PCP referral)• Either through mental health benefit or enhanced Autism ABA services

under NYS insurance reform.• https://www.autismspeaks.org/advocacy/insurancelink

• Community/Private Pay Therapists (M.D., Ph.D., LCSW, LBA)• START program (OPWDD)• community-based crisis prevention and response services for

individuals with ID/DD and behavioral health needs.• Currently offered in Finger Lakes and Capital District, Taconic & Hudson

Valley, projected on Long Island Spring 2016• http://www.opwdd.ny.gov/ny-start/home

Discussion & Closing• Question & Answer Period