1. The Three R’s: Rights, Risks and Restrictions
Pam Treadway, M.Ed.
Senior Clinical Consultant
Bureau of Autism Services
March 13, 2014

2. Agenda Assuring Health & Safety in BAS Programs The Three R’s
Misconceptions
Balancing the Three R’s
Case Examples

3. Assuring Health & Safety in BAS Programs

4. Why should we be concerned?
Due to social, communication and behavioral needs, persons with ASD have increased risk for involvement with law enforcement and/or mental health crisis teams
Incarceration
Institutionalization
Health and safety are important indices of successful support

5. Identifying Potential Risks
Potential Risks to be assessed/identified during ISP development
BAS required assessments
SIB-R Maladaptive Index
QOLQ
Parental Stress
BSS Service – important service for participants at risk of disruptive, dangerous, and destructive behaviors
Required in ACAP
Optional in Waiver

6. Identifying Potential Risks
ISP should identify risk areas
Behavior
Risks related to parental stress
Medical and Health related risks
Documented in General Health and Safety Risks screen in the ISP

7. What is permitted in BAS programs compared to other programs?
BAS programs permit the use of restraints and restrictive procedures
BAS does not permit the use of seclusion
Placing a participant in a locked room (any type of engaged locking device or physically holding the door shut)
BAS does not permit use of aversives
Alternative strategies must be attempted before instituting restraint and restrictive procedures

8. Rights, risks, and restrictions

9. Rights

11. Rights
Individuals with disabilities are afforded the same rights as persons without disabilities
Legal rights assured by the Constitution
Personal liberties at basic level
Participant rights in BAS programs
Examples: right to choose activities, when to go to bed, what to wear; freedom from coercion; right to social interaction, etc.

12. Examples of Participant Rights
The right to pursue vocational opportunities that will promote and enhance economic independence
The right to social interaction with members of either sex
The right to communicate freely with persons of their choice in any reasonable manner they choose
The right to privacy, including both periods of privacy and places of privacy;
 The right to practice the religion of their choice or to abstain from the practice of religion
 The right to receive appropriate care and treatment in the least intrusive manner

13. Personal Liberties Beyond the rights stated in the Constitution
Freedom of Speech, Freedom of Religion, etc…
Choice without coercion
Variety of options
Right to Choose; Right to Refuse
The overall value of day-to-day activities
Unfortunately, these liberties are often compromised for people with disabilities…
Bannerman, et al., 1990

14. Rights and Responsibility
Rights are coupled with RESPONSIBILITY
Rights are not a “free ticket” to do whatever one pleases or that others will recognize that right
Rights of one person may conflict with the rights of another
Need to teach other skills such as negotiation and compromise

15. RISK
RISK

16. Risk: A Perspective Robert Perske
“The world in which we live is not always safe, secure and predictable... Every day that we wake up and live in the hours of that day, there is a possibility of being thrown up against a situation where we may have to risk everything, even our lives. This is the way the real world is. We must work to develop every human resource within us in order to prepare for these days. To deny any person their fair share of risk experiences is to further cripple them for healthy living.”
Robert Perske

17. Dignity of Risk
Means respecting each individual’s autonomy and self-determination to make choices for himself or herself
Means giving people chances to take the risks that go along with ordinary life, which are necessary for personal growth and development
Is a principle that must be applied with care and support, based on each person’s needs, interests and abilities.

18. What Does it Mean to Take Risks?
Weighing the pros and cons to make a decision
Short-term and long-term
Understanding and accepting consequences
Taking responsibility
Recognizing the possibility of failure
Making a choice
Even without full approval of another person

19. RESTRICTIONS

20. Restrictive Procedure Definition
Any practice that:
limits a participant’s movement, activity or function (e.g., restraint)
Interferes with a participant’s ability to acquire positive reinforcement (e.g., time out)
Results in the loss of objects or activities that the participant values (e.g., response cost)
Requires individual to engage in behavior he or she would not engage in if given freedom of choice (e.g., overcorrection)

21. Appropriate Use of Restrictive Procedures
Cannot be used as retribution, convenience of staff, or as a substitute for teaching/skill development
To be used after attempts to anticipate and de-escalate behavior using less intrusive interventions

22. Restrictive Procedures
Many providers have their own internal policies on the use of restrictive procedures
Program Regulations may apply (e.g., Res Hab, Day Hab, Family Living)
Conflicts may arise when participant behavior cannot be assured with non-restrictive interventions
Ultimately, participant health and welfare must be assured

23. Restraint
Restraints involve the forced restriction or immobilization of a participant’s body or parts of the body using physical, mechanical or chemical means, or seclusion
Physical/Manual
Mechanical
Chemical

24. Restraint
A physical or hand over hand prompt that lasts longer than 30 seconds is considered restraint.
All restraint (approved component in the BSP or used in an emergency) must be reported in EIM.

25. misconceptions

26. Misconception: Restrictive Procedures
Restrictive procedures are not permitted in BAS programs
FALSE!
BAS does permit restrictive procedures
Providers may have internal policies regarding restrictive procedure use
If used, BAS has established protocols

27. Misconception: Rights
Rights are an all or nothing proposition
FALSE!
There is a balance between rights and responsibilities
Habilitation and choice (rights) do not have to be at conflict

28. Misconceptions: Risks
All risks must be eliminated
FALSE!
Supporting people in prudent risk taking and utilizing an abundance of teaching opportunities can result in improved quality of life

29. Balancing the three r’s

31. Balancing the Three R’s
Concerns about health, safety, community acceptance, and general welfare can lead us to overprotect participants
Overprotection from risk-taking denies participants first hand experiences needed to learn from successes and failures

32. Activity: Interactive Posture Survey
Self-assessment
Means to evaluate our interaction styles
Based on the work of John McGee (Gentle Teaching)
What is your interactive posture?

33. Interaction Posture Survey: Four Postures
Solidarity
Values participant’s perspective
Provides growth-directed experiences
Participant success is important
Works together for positive outcomes
Authoritarian
Caregiver is in charge
Only one way to do something – caregiver’s way

34. Interaction Posture Survey: Four Postures
Overprotective
Values taking care of and protecting participant
Fosters dependency in safe, predictable routines
Cold-mechanistic
Values task/activity completion
Caregiver is robot-like
Knows little about the participant

35. Other Interactional and Teaching Styles
Directive versus Facilitative (Mirenda & Donnellan, 1986)
Facilitative
Follows participant’s attentional focus
Offers choices and alternatives within activities
Responding to and acknowledging participant’s intent
“follow the participant’s lead”

36. Other Interactional and Teaching Styles
Directive
Implies imposing greater demands on participant
Frequent attempts to bring participant’s attention to events/activities chosen by the caregiver
More intrusive prompting
Evaluate comments – participant’s responses are right or wrong

37. Interactional Styles Flexibility is key
Interactional styles may change depending on needs of the participant, the nature of the activity or skill being taught

38. Balancing the Three R’s
At the other end of the spectrum, unquestionably honoring all choices is equally problematic
WHERE DOES THAT LEAVE US???

39. Balancing the Three R’s
Our goal should be a better balance
Consider what is important TO the person and what is important FOR the person
With a balance, the participant gets what is important to him/her and any concerns about health, safety, well-being are addressed within the context what they want.

40. Tips for Balancing the Three R’s
To achieve balance, consider:
Is there a good balance between how the person wants to live and staying healthy and safe? Is the participant (and those who know and care about the person) satisfied with the balance?
Where there is dissatisfaction, where things are not working, are there other ways of interpreting or understanding the issues affecting the participant and the meanings of his/her behavior?

41. Tips for Balancing the Three R’s
Do any of the alternative ways of understanding the participant’s issues and behavior suggest positive actions that could result in a better balance?
If these alternative ways of understanding are acted upon, how will people know if the changes work?
(Michael W. Smull)

42. Balancing the Three R’s
Other suggestions/considerations:
How is information presented to the participant so that he/she can make the best informed decision?
Be flexible with supports
Encourage exploration of options
Allow participant to change mind
Accept that participant may make mistakes

43. Balancing the Three R’s
Intervention is necessary in situations where the person’s choice poses serious health or safety risks
Even in situations where intervention is warranted, explore alternatives with the participant. Opportunities for control are still possible, even in situations that warrant tighter boundaries

44. Case examples

45. Case Example
Barb: Resides in a residential setting with a roommate. Her support staff have been struggling to get her to shower on a regular basis, wear clean clothing, brush her hair and brush her teeth. When meeting with their supervisor, the staff express their frustration with Barb’s uncooperative behavior. When questioned how they respond to Barb’s behavior, the staff explained that they usually prompt Barb one time which is usually followed by a refusal. When pressed for what they do next, the staff stated that they drop the subject and let her go out without showering, wearing dirty clothes, and poor hygiene because after all it is her RIGHT to refuse.

46. What can we do? Reframe staff thinking regarding “rights”
Utilize Behavioral Specialist services
Assess skills related to hygiene to determine if instruction is needed
Help Barb establish a daily hygiene routine that incorporates her personal choices and preferences
Establish relationship that will allow for open dialogue with Barb about the potential outcomes of her poor hygiene

47. Case Example
Tyrone: Lives in his own apartment in a suburban area. He is African-American and grew up in the same city in which he currently resides. A few members of his team are extremely concerned that he walks to his old neighborhood to visit with relatives and friends. They want to restrict him from visiting in the neighborhood because they feel it is an unsafe area of the city and that it places his personal safety at risk. When the subject is discussed with Tyrone he becomes very upset and tells his team to stay out of his personal business and to stop interfering with his family. This discussion often leads to challenging behavior.

48. What can we do?
Consider if this an area that falls under “dignity of risk”
This is his neighborhood where he grew up and his culture, do we need to intervene?
Are we making assumptions/judgments based on our own personal beliefs?
Consider “assessing” the risks involved with walking to the neighborhood and developing strategies that may reduce risk (e.g., walking different route, time of day when visiting, teaching skills to increase personal safety and reduce vulnernabilities)

49. Case Example
Alex: Receives residential rehabilitation services, BSS, and Community Inclusion. He has a significant history of engaging in challenging behavior that places him at a high risk of involvement with law enforcement and potential psychiatric hospitalizations. Behaviors include possession of illegal drugs, viewing child pornography, stalking a neighbor, refusals to complete personal hygiene, refusals to take medications as prescribed, and verbal aggression directed at staff. Alex states that all he wants to do is sit at home and watch reruns of Criminal Minds. He currently has no “restrictions”. He has not responded to the current behavioral interventions.

50. What can we do? Reassess behavior (review or redo FBA)
Interview Alex as part of behavioral assessment
Identify the current risks
Identify what Alex wants/desires
Consider if Alex is making informed decisions about his behavior
Identify what skills may need to be taught
Develop Risk Management Plan to reduce risk
Consider implementing a “restrictive” Behavior Support Plan to address those high risk behaviors

51. Final Thoughts When there are complex issues of health and safety……
Helping participants have more of what is important to them makes them more willing to work with us on what is important for them!

52. Optimal Balance
Important To
Important For

53. References
Hedeen, D.L., Ayres, B.J., Meyer, L.H., & Waite, J. (1996). Quality inclusive schooling for students with severe behavioral challenges. In D.H. Lehr & F Brown (Eds.), People with Disabilities Who Challenge the System (pp ). Baltimore: Brookes Publishing
Mirenda, P., & Donnellan, A. M. (1986). The effects of adult interaction style on conversational behavior in students with severe communication problems. Language, Speech and Hearing Services in Schools, 17,
Smull, M. (2003). Helping people be happy and safe: Accounting for health and safety in how people want to live. In V.J. Bradley & M. Kimmich (Eds.), Quality Enhancement in Developmental Disabilities: Challenges and Opportunities in a Changing World (pp ). Baltimore: Brookes Publishing.