The Core Concepts of Disability Policy, Organizing Principles, and the Principle of Dignity

1. The Core Concepts of Disability Policy, Organizing Principles, and the Principle of Dignity Rud Turnbull, B.A., Ll.B./J.D., Ll.M. Distinguished Professor Emeritus Co-founder, Beach Center on Disability University of Kansas Research Professor, Frank Porter Graham Institute University of North Carolina at Chapel Hill Rud@ku.edu Anita Zucker Center for Excellence in Early Childhood StudiesStarting Ahead, Staying Ahead Colloquium Series 2018University of FloridaGainesville, FLJanuary 26, 2018

3. “I believe in human dignity as the source of national purpose, human liberty as the source of national action, the human heart as the source of national compassion, and in the human mind as the source of our invention and our ideas.”

4. Origins and Research Questions • What are the core concepts of the policies that • surround my son • are at the center of my research and advocacy • explain so many cases, statutes, and declarations/position statements

5. Core Concepts • Core – central and foundational; basic, essential, enduring part; essential meaning • Concept – something conceived in the mind; an abstract or generic idea generalized from particular instances • Thus, as to all persons and families • all disabilities (regardless of nature or extent) • all ages • all disciplines

6. Methodology • Primary Sources – federal statutes, Supreme Court decisions • Expert Respondents – 104, federal-state-local-private sector, individual interviews, focus groups, respondent check and critique • Secondary sources – research-based commentary

7. Core Concepts and Over-Arching Principles • 18 core concepts • 9 over-arching principles • 3 constitutional principles • 3 ethical principles • 3 administrative principles

8. Caveats • Enmeshment – no absolutely clear boundaries among core concepts • Over-arching principles exemplify fuzziness • No absolutely defensible logic of presentation • Limited citations to statutes, cases, and DEC position statements

9. Antidiscrimination – Equal Protection • Nature of Equality – three tiers • Purely equal treatment • Equal treatment plus – reasonable accommodations • Unequal but not invidious treatment • Statutes – ADA, Sec. 504, IDEA. • Cases – City of Cleburne v. Cleburne Living Center, Inc. (1985) – housing and zoning; Olmstead v. L.C. (1999) – community placement

10. Individualized and Appropriate Services • Nature of IAS – specially tailored services that blunt discrimination and create equal opportunity • Statutes – IDEA, ADA, Rehab Act, Ch. and Comm. Mental Health Systems Improvement, Child Health Act, EPSDT, Child Welfare Acts, DD Act • Cases – Endrew F. v. Douglas Co. School District R-1 (2017) – education that ensures opportunity for progress

11. Individualized and Appropriate Services • DEC • Code of Ethics, Article I (duty to foster human development) • Code of Ethics, Article II (individualized services) • Position Statement on Positive Outcomes

12. Classification • Nature of Classification – fair determination of eligibility; nondiscriminatory evaluation (procedures and standards) • Statutes – same as IAS • Cases – same as Anti-discrimination • DEC • Code of Ethics, Article I (assessment strategies)

13. Autonomy • Nature of Autonomy – right to give, withdraw, or withhold consent; independence, choice, self-determination; see Empowerment and Participatory Decision Making, and Privacy and Confidentiality • Statutes –DD Act, Rehab Act, IDEA, FERPA

14. Autonomy • Cases (one U.S. Sup. Ct. case; principally state law) – Cruzan v. Director (U.S. Sup. Ct., 1990) – right of state to require clear and convincing proof of autonomous desire of person not to be given life-sustaining/extending medical treatment • DEC • Code of Ethics, Preamble (family autonomy, empowerment) • Code of Ethics, Article III (family-related practices)

15. Empowerment and Participatory Decision Making • Nature of EPDM – the means for autonomy; participation in decisions about services; applies at macro/system- and micro/individual-levels • Statutes – IDEA, DD Act • Cases – same as Autonomy • DEC – same as Autonomy

16. Privacy and Confidentiality • Nature of Privacy/Confidentiality – privacy is protection against unwarranted state intrusion into private interests; confidentiality is protection of records and statements from the same • Statutes – FERPA • Cases – none • DEC – no explicit provision

17. Privacy and Confidentiality • DEC • Code of Ethics, Article I (personal integrity and trustworthiness) • Code of Ethics, Article III (families and confidentiality) • Code of Ethics, Article IV (confidentiality)

18. Capacity-based Services • Nature of Capacity-Based Services – anti-pathology; consider strengths and needs together; aligns with autonomy and EPDM, and with Anti-dis and IAS; takes into account person/family’s resources, priorities, concerns • Statutes –same as IAS • Cases – same as Autonomy & EPD, and as Antidiscrimination and IAS; especially Endrew on “progress” (2017) • DEC -- Code of Ethics, Article I (human potential of each child)

19. Service System Coordination and Collaboration • Nature of C&C – effective access to services and benefits from separate but related provider systems (inter-agency) or from units within same system (intra-agency) • Statutes – IDEA, Tech Act, Children’s and Communities’ Mental Health Systems Improvement Act, Child Health Act

20. Service System Coordination and Collaboration • Cases – none of particular importance but see current DOJ use of Olmstead, especially in Rhode Island and previously in anti-institutional cases in Virginia, Maryland, Delaware, and NC, to create community-based home-job-education system coherence • DEC • Code of Ethics, Article I (honor multidisciplinary collaborators) • Code of Ethics, Article II (interdisciplinary collaboration)

21. Protection from Harm • Nature of PVH – right to be free from harm (abuse, neglect, maltreatment) while in state custody, and from family or other caregivers who are not state agents • Cases – Youngberg v. Romeo (1982) – liberty interest in training to secure liberty from state custody and undue restraint by state agents; DeShaney v. Winebago (1983) – liability of state does not attach in absence of physical custody by state

22. Protection from Harm • Statutes – Adoption, foster-care, and child-welfare statutes; Child Health Act (limiting restraints); Child Abuse Prevention and Treatment Act (creates presumption in favor of medical treatment of new-borns with birth anomalies); Every Student Succeeds Act (anti-bullying and seclusion/restraint); IDEA (functional behavioral assessment, behavior intervention plans, and positive behavior supports, individually and school-wide)

23. Protection from Harm • DEC • Code of Ethics, Article I (duty of beneficent action; duty to report incompetence) • Position Statement on Child Maltreatment • Position Statement on Health, Safety, and Welfare

24. Liberty • Nature of Liberty – right to freedom from unwarranted physical restraint or other confinement by government; includes principle of least drastic means • Statutes – DD Act; IDA; Children’s and Communities’ Mental Health systems Improvement Act, Child Health Act • Cases –O’Connor v. Donaldson (1974) – state may not constitutionally confine in mental hospital non-dangerous person capable of living safely in community; Youngberg v. Romeo (1982) – institutionalized person has right to training to ensure safety and freedom from restraint

25. Integration • Nature of Integration – freedom from segregation, right to access to community and public and private services; access to universalistic/generic and to exceptionalistic/ specialized services; includes concept of inclusion and principle of least restrictive environment; aligns with Anti-discrimination • Statutes – same as Anti-discrimination, especially IDEA, Sec. 504, and ADA. • Cases – Cleburne and Olmstead

26. Integration • DEC • Code of Ethics, Article I (inclusive environments) • Position Statement on Inclusion

27. Productivity and Contribution • Nature of P&C – engagement in income-producing work or in unpaid work that contributes to household or community; includes economic self-sufficiency • Statutes – IDEA, ESSA, ADA, Sec. 504, T. XIX HCBS Waivers, DD Act, Workforce acts • Cases – see antidiscrimination and integration

28. Family Integrity and Unity • Nature of FIU – recognizes family as core unit of society; presumption favoring family preservation and strengthened capacity of individuals to be in/of a family; acknowledges value of “home” to persons with disabilities

29. Family Integrity and Unity • Statutes – Child Abuse Prevention and Treatment and Adoption Reform Act; Adoption Assistance and Child Welfare Act; Adoption and Safe Families Act; Foster Care Independence Act – collectively, these acts authorize federal assistance to states to operate foster care, adoption assistance, family support, family preservation, and foster-care transition services; T. XIX HCBS Waivers, creating family support services; T. XX, creating social services; T. XX, presumption favoring family preservation and strengthening of capacity of individuals to be in/of a family; Title XVI, creating SSI program; Children’s and Communities’ Mental Health Systems Improvement Act; Family and Medical Leave Act

30. Family Integrity and Unity • Cases – Santosky v. Kramer (1982) – right to due process (state has burden of proof by clear and convincing evidence) in parental termination proceedings; Baltimore v. Bouknight (1990) – state may compel mother to produce child for evaluation in child abuse proceedings

31. Family Integrity and Unity • DEC • Code of Ethics, Article III (family-responsive practices) • Code of Ethics, Article IV (diversity) • Position Statement on Family, Culture, and Language

32. Family-Centered Services • Nature of Family Centeredness; Services to Whole Family – rests on family-systems theory; responds to needs of person with disability and thereby to needs of family (primary/secondary beneficiary); services help family raise child in family household, strengthen role of family as primary caregiver, maintain family’s intactness and unity (see FIU), and reunite families after person has been placed out of home

33. Family-Centered Services • Statutes – same as FIU but also SSI (T. XVI, Social Security Act), and especially T. V (Maternal and Child Health) • Cases – see FIU • DEC • Code of Ethics, Article III (family-responsive practices) • Code of Ethics, Article IV (diversity) • Position Statement on Family, Culture, and Language

34. Cultural Responsiveness • Nature of Cultural Responsiveness – recognizes principle of American pluralism; acknowledges core concepts of autonomy and EPDM; acknowledges claims of diverse populations (varieties of beliefs, values, attitudes, ethics, languages, ethnicities, origins, SES traits).

35. Cultural Responsiveness • Statutes – Indian Child Welfare Act; IDEA; DD Act; T. VI of Civil Rights Act of 1964; Children’s and Communities’ Mental Health Systems Improvement Act • Cases –Mississippi Band of Choctaw Indians v. Holyfield (1989) – Indian Child Welfare Act tribal jurisdiction extends to Native American children who have never lived on tribal reservation

36. Cultural Responsiveness • DEC • Code of Ethics, Article III (family-responsive practices) • Code of Ethics, Article IV (diversity) • Position Statement on Family, Culture, and Language

37. Accountability • Nature of Accountability – methods of ensuring the designated outcomes of policy and services; includes legal (procedural safeguards, rights of action, remedies), fiscal/financial, professional (certification, accreditation, e.g.), administrative (ombudsman, inspectors general, human rights committees, service linkages and coordination including “case/care management”, capacity building), and electoral accountability

38. Accountability • Statutes – IDEA, ADA, Sec. 504, Civil Rights Acts • Cases – Parham v. J.R. (1979) – parents’ petition to commit minor child must be reviewable by disinterested professional or court; see also cases on termination of parental rights (family unity and integrity, protection from harm)

39. Accountability • DEC • Code of Ethics, Article I (duty of competence; advocacy for quality of life; empathic reflection) • Code of Ethics, Article II (credentialing, licensure) • Code of Ethics, Article IV (institutional review boards) • Code of Ethics, Article IV (evidence-based practices) • Position Statement on Personnel Standards

40. Professional and System Capacity Development • Nature of SCD – insists on capacity of professionals and service systems to implement statutory or other duties and comply with core concepts that affect them; invokes judicial doctrine of deference to professional judgment (doctrine of presumptive validity) in accordance with statutory or constitutional standards of professionalism

41. Professional and System Capacity Development • Statutes – IDEA (Part D); Head Start Act (2007) • Cases – Endrew F. v. Douglas Co. (2017) – professional duty under IDEA to develop IEP ensuring progress • DEC • Code of Ethics, Article IV (evidence-based practices) • Position Statement on Personnel Standards

42. Prevention and Amelioration • Nature of P&A – primary, secondary, and tertiary prevent of a disabling condition or of the effects of a disabling condition • Statutes – IDEA, DD Act, T. V (Maternal and Child Health), T. XVIII (Medicare), T. XIX (Medicaid), T. XX (Social Services), T. XXI (CHIP), HIPAA, ACA/Obamacare; Mental Health Parity Act; Emergency Medical Treatment Act; various adoption and child welfare acts

43. Prevention and Amelioration • Cases – Youngberg v. Romeo (1982) • DEC • Code of Ethics, Article I (human potential of each child) • Position Statement on Low Birthweight

44. Making Sense: Developing a Taxonomy What do the core concepts collectively express? Any over-arching, under-girding principles? If so, how describe/portray the “sense”?

45. Constitutional Principles – Tell What and Why • Life – sanctity and quality • Prevention • Protection from harm • Integration • Productivity

46. Constitutional Principles – Tell What and Why • Liberty – freedom • Autonomy • Empowerment and participatory decision making • Privacy and confidentiality • Integration • Productivity

47. Constitutional Principles – Tell What and Why • Equality – Equal protection, equality of opportunity, access, benefit, accommodations • Antidiscrimination • Cultural responsiveness • Integration • Productivity

48. Ethical Principles: Tell What and Why • Dignity – inherent and attributed; respect • Antidiscrimination • Prevention and amelioration • Protection from harm • Autonomy • Empowerment and participatory decision making • Privacy and confidentiality • Physical liberty • Capacity-based services • Cultural responsiveness

49. Ethical Principles: Tell What and Why • Family as Foundation • Antidiscrimination • Prevention and amelioration • Protection from harm • Autonomy • Empowerment and participatory decision making • Family integrity and unity • Family centeredness • Cultural responsiveness

50. Ethical Principles: Tell What and Why • Community – physically in, psychologically belonging, culturally welcomed • Antidiscrimination • Integration • Productivity • Cultural responsiveness • Autonomy • Empowerment and participatory decision making • Privacy and confidentiality • Liberty (physical)