Overview of Training on How to Become Effective Disability Policy Change Agents

1. Overview of Training onHow to BecomeEffective Disability PolicyChange Agents

2. Prepared By:Robert Silverstein, Director Robert "Bobby" Silverstein Powers Pyles Sutter & Verville, P.C. 1501 M Street, N.W., 7th Floor Washington, D.C. 20005 Telephone: 202.466.6550; Fax: 202.785.1756 Bobby.Silverstein@ppsv.com; website www.ppsv.com

3. The Need for Effective Disability Policy Change Agents Historically, people with disabilities have been subjected to degradation, exclusion, segregation, and denial of appropriate services and supports. They have been treated as “defective” and in need of “fixing.”

4. The Need for Effective Disability Policy Change Agents (Continued) Our nation’s policy makers have slowly begun to reject this old approach and adopted a new approach that recognizes that disability is a natural and normal part of the human experience that in no way diminishes a person’s right to fully participate in all aspects of society.

5. The Need for Effective Disability Policy Change Agents (Continued) Policy makers are also beginning to recognize that in order for people with disabilities to fully participate in all aspects of society, our nation’s policies must ensure that society “fixes the natural, constructed, cultural, and social environment.

6. The Need for Effective Disability Policy Change Agents (Continued) These changes in policy affecting persons with disabilities did not occur by happenstance; they were the result of advocacy by effective disability policy change agents.

7. What is Policy? Policy includes the formulation of solutions to problems of general concern to the public. Policy often sets forth rights. Policy also prescribes appropriate behavior and proscribes inappropriate behavior by covered entities.

8. What is Policy? (Continued) Policies are included in laws enacted by the legislative branch. Policy is also included in regulations, guidelines, handbooks and interpretations adopted by executive agencies. Policy interpretations also appear in judicial decisions.

9. What is Disability Policy? Disability policy includes policy specifically targeted at addressing the needs of persons with disabilities and their families. Examples include the Individuals with Disabilities Education Act (IDEA) and the Rehabilitation Act.

10. What is Disability Policy? (Continued) Disability policy also includes generic laws that address the needs of nondisabled persons as well as persons with disabilities. Examples include Medicaid and the Workforce Investment Act (WIA) (establishing One-Stop career centers).

11. Who Makes Public Policy? Where is Public Policy Made? Policy makers make public policy. Policy makers include members of the legislative branch (e.g., Congress, state legislature, city council), the executive branch (e.g., agencies, school boards and schools), and the judicial branch (justices, judges and administrative law judges).

12. Who Makes Public Policy? Where is Public Policy Made? (Continued) Public policy is proposed, debated, modified and adopted in a political environment where politics, power, self-interest, and compromise are the standard “tools of the trade.”

13. Change in Public Policy is the Exception Not the Rule. The public policy process is complex and uncertain. Tens of thousands of ideas are competing for a place on the policy agenda. Most ideas go nowhere for various reasons e.g., competing interests favor the status quo, limited time, or the press of others matters.

14. People Make a Difference. It takes people to bring about change. Every public policy has its champions and advocates. Everyone can make a difference in the process—each in his or her own way. Some people may choose to share a problem with a policy maker; others may join an organization; still others may conduct research or lobby or run for office.

15. Characteristics of Effective Disability Policy Change Agents. Passion, anger, frustration and commitment are often necessary but not sufficient characteristics of effective disability policy change agents. In order to advance progressive disability policy, an effective disability policy change agent must channel these emotions and beliefs and develop appropriate skills to exercise POWER.

16. Knowledge is Power. Often times, policy is adopted because of the effective use of power. One component of power is knowledge. Effective disability policy change agents must possess knowledge about: * The historical treatment of people with disabilities;

17. Knowledge is Power. (Continued) * The values and guiding principles of disability policy; * The subject matter e.g., education, health care, job training; * The legislative and administrative process;

18. Knowledge is Power. (Continued) * Organized coalitions and strategic plans; * Approaches for interacting with policy makers; * Negotiation and communication techniques and skills.

19. Emerging Disability Policy Framework: A Guidepost for Analyzing Public Policy Iowa Law ReviewAugust 2000, Vol. 85/No. 5

20. Prepared By:Robert Silverstein, Director Robert "Bobby" Silverstein Powers Pyles Sutter & Verville, P.C. 1501 M Street, N.W., 7th Floor Washington, D.C. 20005 Telephone: 202.466.6550; Fax: 202.785.1756 Bobby.Silverstein@ppsv.com; website www.ppsv.com

21. Download This Guide For Free At: • http://www.childrenshospital.org/ici • http://www.comop.org • http://www.uiowa.edu/~lhpdc/work. index.hmtl

22. I. Uses of Disability Policy Framework • How do policy makers view/treat people with disabilities? • The disability policy framework can be used: *As a lens, guidepost, benchmark to assess social policy from the viewpoint of persons with disabilities

23. Uses of Disability Policy Framework (Continued) * To look at how persons with disabilities and their families are addressed in public policy * As a measure for expanding and improving public policy for persons with disabilities

24. Uses of Disability Policy Framework(Continued) The disability policy framework can be used to look at all types of public policy such as: * Generic programs and policies that include people with and without disabilities * Disability-specific programs and policies focused solely on persons with disabilities and their families

25. II. Old and New Paradigm • Old Paradigm 1. View/treat people with disabilities as “defective and in need of “fixing” 2. Disability connotes “unable” and “incapable” 3. Approach: out of sight,out of mind

26. Examples: * Ugly laws - state laws which stated that persons with specified disabilities are “unfit for citizenship” * State laws that required sterilization of the “feebleminded” with the aim of “extinguishing their race”

27. Examples: (Continued) * States laws that permitted school districts to exclude children with disabilities when school officials determined that it was too much of a burden or “inexpedient” to serve them or because they produced a “nauseating” effect on others

28. Examples: (Continued) * Forced institutionalization -- state laws that required persons with disabilities to be placed in institutions because they were a “menace to society”

29. B. New Paradigm 1. Disability is a physical or mental condition that affects a person’s ability to function 2. Focus on how a person with a disability interacts with the world

30. New Paradigm (Continued) 3. New core precept—disability is a natural part of the human experience that in now way diminishes a person’s right to fully participate in all aspects of American life 4. Goal of public policy is determine how society can “fix” the environment to provide effective and meaningful opportunities

31. III. Goals, Core Policies, Methods of Administration and Support Program Constituting the Disability Policy Framework

32. A. Goals of Disability Policy 1. Equality of Opportunity 2. Full Participation 3. Independent Living 4. Economic Self-Sufficiency

33. B. Core Policies 1. Equality of Opportunity * Individualization (treat people on the basis of facts and objective evidence, not generalizations, stereotypes, or fear ignorance and prejudice

34. Equality of Opportunity (Continued) * Genuine, effective and meaningful opportunity (provide reasonable accommodations, make programs accessible, and make reasonable modifications to policies) * Inclusion and integration (guarantee contact with nondisabled persons, avoid unnecessary and unfair separation and segregation

35. 2. Full Participation * Involvement in decision-making by persons with disabilities and their families at the individual and systems levels * Ensure informed choice

36. Full Participation (Continued) * Provide for self-determination and empowerment * Recognize self-advocacy

37. 3. Independent Living * Recognize independent living as a legitimate outcome of public policy * Provide for independent living skills development

38. Independent Living (Continued) * Provide for long-term services and supports, including personal assistant services and assistive technology devices and services * Provide cash assistance

39. 4. Economic Self-Sufficiency * Recognize economic self-sufficiency as a legitimate outcome of public policy * Support systems providing employment-related services

40. Economic Self-Sufficiency (Continued) * Provide cash assistance with work incentives and other forms of assistance * Devise a tax policy providing work incentives to employers and employees

41. C. Methods of Administration 1. Methods of Administration, In General 2. State and Local Plans, Applications, and Waivers 3. Monitoring and Enforcement by Government Agencies

42. Methods of Administration (Continued) 4. Procedural Safeguards 5. Accountability for Results (Outcome Measures) 6. Representation at the Individual and Systems Level

43. Methods of Administration (Continued) 7. Single Line of Responsibility/Coordination and Collaboration Among Agencies 8. Service Coordination 9. Financing Service Delivery 10. Privacy, Confidentiality, Access to Records, and Informed Consent

44. Methods of Administration (Continued) 11. Comprehensive System of Personnel Development and Personnel Standards 12. Racial, Ethnic, and Linguistic Diversity 13. Fiscal Provisions

45. Methods of Administration (Continued) 14. Financial Management and Reporting Provisions

46. D. Program Supports 1. Systems Change Initiatives 2. Technical Assistance 3. Research

47. Top Ten Tips for Disability Policy Change Agents on How to Influence Policy Makers and the Policy Making Process

48. Prepared By:Robert Silverstein, Director Robert "Bobby" Silverstein Powers Pyles Sutter & Verville, P.C. 1501 M Street, N.W., 7th Floor Washington, D.C. 20005 Telephone: 202.466.6550; Fax: 202.785.1756 Bobby.Silverstein@ppsv.com; website www.ppsv.com

49. 1. Understand Historical and Policy Context • Research treatment of persons with disabilities (such as exclusion, segregation, and automatic referral by generic system to disability system). • Become knowledgeable about current policy framework and its strengths and inadequacies.

50. Understand Historical and Policy Context (Continued) • Use understanding of historical and policy context to explain why change is necessary and the nature and scope of needed changes to current policy. • Recognize intensity of feelings by persons with disabilities regarding why critical to develop new or modify existing policy based on historical treatment.