Division of Developmental Disabilities

1. Division of Developmental Disabilities The Historical Perspective – an Introduction to Supporting Persons with Challenging Behaviors

2. The Historical Perspective Based on a belief that peoples differences are more important than their similarities From 1880 to 1950 people were served in institutions. Our 1st institution was Lakeland Village established in 1905. By the 1950’s over 4,000 people lived in institutions –isolated from their home communities.

3. The Historical Perspective 1950s to 1960s – Families Demand Community Services Willowbrook - Exposed by Geraldo Rivera Kay Epton – powerful woman legislator in the 60’s started the Epton Centers The migration began from the institutions to Group Homes

4. The Historical Perspective 1970s – Professional Influence Mark Gold – People can learn – if one way doesn’t work, try another way. Education for ALL 1974 – WA first in 1972 John and Connie Lyle O’Brien – the perceptions you hold can actually hurt other people - PASS workshops

5. The Historical Perspective Mid – 70s Created a field operation case services & family support known as Home Aid. Realized large group homes (20-30 people) was not where people wanted to live. Started AL and SL

6. The Historical Perspective The 1980’s “Be careful what you build” – The further you get from typical, the more likely you will soon have to tear it down. Published the Residential and County Guidelines – 6 benefits Start moving towards full employment

7. The Historical Perspective Health and Safety Personal Power and Choice 6 Benefits – • Personal Value and Positive • Recognition By Self and Others

8. A Range of Experiences Which Help People Participate in the Physical and Social Life of Their Communities The Historical Perspective • Good Relationships with Friends and Relatives 6 Benefits (continued) Competence to Manage Daily Activities and Pursue Personal Goals

9. The Historical Perspective The 1990’s- Quality Assurance Measure Success by evaluating against the 6 Benefits Parent Coalitions Self – Advocates demand respect, homes and jobs.

10. The Historical Perspective The 2000s- Partnerships If you want to know your partners, look for the person in your way – Linda Rolfe 9 Critical Audits shaped our future Opportunity to improve our data, show the impact of not serving families.

11. The Vision for the Future We will continue the work, create a “real” life for people with Developmental Disabilities. We will build better partnerships. We will remain constant in our VALUES. Don’t try to figure out who did something wrong, focus on what is right. Linda Rolfe- Division Director – Residential Conference - 2007 38 years of service in 3 different regions

12. Supporting Persons With Challenging Behaviors Tom James Ph.D. DDD Region 5 Field Services Psychologist Jamestf@dshs.wa.gov

13. DDD POSITIVE BEHAVIOR SUPPORT POLICY 5.14 Describes the Division's general approach to promoting quality of life and adaptive behavior ….. by providing positive behavior support for individuals with challenging behaviors. Positive behavior support must be emphasized in all services funded by DDD for persons with developmental disabilities.

14. POSITIVE BEHAVIOR SUPPORT Is an approach for dealing with challenging behavior that focuses on changing the environment and skill deficits that contribute to the person’s problem behavior. Is based on respect, dignity, and personal choice. It helps develop effective means of meeting a person's needs and helps reduce problem behaviors.

15. COMMON TYPES OF SUPPORT Assisting a person to live in a home that is safe, attractive, and in a location that is readily accessible to the community, activities, friends, and relatives  Providing a person opportunities and assistance to: Learn how to make choices and exercise personal power Manage daily activities, pursue personal goals, and access good health care

16. Form and maintain significant friendships and relationships Participate in a broad range of activities that the person enjoys Promote positive recognition by self and others, Include work, leisure, socialization and personal interests.

17. THINGS TO DO TO SUPPORT A PERSON WITH CHALLENGING BEHAVIORS OR HOW TO UNCOVER THE REAL THINGS THAT A PERSON MIGHT NEED SO THAT YOU CAN BE MORE SUPPORTIVE From 10 Things You Can Do To Support A person With Difficult Behaviors David Pitonyak PhD 2002, my mentors, the persons with challenging behaviors I have been privileged to know and to learn from, Ruth Ryan MD, and Wade Hitzing PhD

18. GET TO KNOW THE PERSON The Whole Human Being, not just the their labels, behaviors etc. Spend time with the person in places they enjoy, at times of the day they choose. Tell the person about your concerns and ask for their permission to help.

19. ALL BEHAVIOR IS • MEANINGFUL • Challenging Behaviors are messages • about unmet needs and • the quality of a person’s life: • I don’t feel safe • I have no power • I’m lonely • I’m bored • You don’t value me • I don’t know how to tell you what I need • My body hurts

20. Ask the person and their supporters what the person needs to be happy. Find out who the person counts on in a pinch. How often does the person see loved ones or friends? What are the person’s favorite things to do? Where does the person like to go to?

21. What leads to the person becoming unhappy? Who are the people the person does not like? How often does the person see them? What are the person’s least favorite things to do? Does the person have a way to let others know what they need and how they feel?

22. Is the person in physical or psychological distress? What kinds of medications is the person taking? Do the medications help? Are there times when the person’s challenging behaviors happen more frequently? Are there times when the person’s challenging behavior happen less frequently or not at all?

23. HELP THE PERSON DEVELOP A SUPPORT PLAN Not a plan to “Fix” the person, a plan to support the person having a real and authentic life: How can we help the person to achieve health and well being? How can we help the person to maintain their relationships and to make new ones?

24. How can we help the person to increase their presence and participation in everyday community life? How can we help the person to have more choices in life? How can we help the person to learn skills that enhance their participation in community life? How can we help the person to make a contribution to others?

25. DEVELOP A SUPPORT PLAN FOR THE PERSON’S SUPPORTERS What can be done to increase support staff’s level of safety and comfort when someone is behaving dangerously? What can be done so that everyone, the person and support staff, have more fun at work?

26. How can staff have more control over their schedule? How can support staff get more training and consultation to better understand the needs of the people they are supporting? How can support staff have more input into decisions? How can managers better support, support staff?

27. DON’T ASSUME ANYTHING Don’t underestimate a person’s potential because of labels, or because they have failed to acquire certain skills. People have gifts and capacities that outshine our labels. A person’s potential depends largely upon the adequacy of their supports rather than on their inherent flaws or “defects”.

28. Always speak directly to the person and explain things as clearly as you can, even if the person’s label suggests that they cannot understand. Never speak about a person as though they were not in the room.

29. RELATIONSHIPS MAKE ALL THE DIFFERENCE Loneliness is the most significant disability of our time. Connection to other human beings is vital to quality of life. All too often, the only relationships the person we support has are paid staff. There are many people in the community who could benefit from knowing this person we are supporting.

30. HELP THE PERSON TO DEVELOP A POSITIVE IDENTITY Help the person to find a way to make a contribution. Help the person to learn how to support friends. Help the person and others to see strength and the capacity to give, when deficits were all that anyone ever saw before.

31. INSTEAD OF ULTIMATUMS, PROVIDE CHOICES If the person’s behavior challenges you, help them find more desirable ways to express the need that underlies the behavior. Provide opportunities for the person to make decisions throughout the day.

32. If the person has trouble making choices, find a way to help them to make choices. Make a commitment to fairness in your relationship with the person you support. The goal is to teach the person that giving is a two way street.

33. HELP THE PERSON TO HAVE MORE FUN Fun is a powerful antidote to challenging behaviors. Count the number of things the person enjoys, the number of places they like to go. Compare this to the number of things other people enjoy, and the number of places other people go.

34. Is this person having fun? Is this person experiencing enough joy? Is this an interesting life, with things to look forward to? Help the person to add to their list of really interesting and fun things to do and places to go. Spend time with the person in regular community places where people hang out. Make fun a goal.

35. ESTABLISH A GOOD WORKING RELATIONSHIP WITH THE PERSON’S PRIMARY HEALTH CARE PHYSICIAN Many people who exhibit challenging behavior do so because they don’t feel well. Physicians, like many other people have difficulty understanding the communication of a person with substantial disabilities.

36. Help the physician to understand the person’s ways of communicating. Help the physician by learning what information they need and by making a sustained effort to provide good information to them. Don’t be afraid to tell the physician that you don’t understand a finding or a recommendation. It is important that you get clear and straight forward answers to all of your questions, so that you have a clear understanding of how to support the person.