Aging and disability bridging experiments in the United States: Progress and challenges

1. Growing Older with a Disability, FICCDAT • Toronto, Canada June 8, 2011 Aging and disability bridging experiments in the United States: Progress and challenges Michelle Putnam, PhD Simmons College School of Social Work, Boston, MA, USA

2. Presentation Agenda • Brief history of Bridging by way of “Systems Change” policies. • Operationalization of Systems Change in the U.S. through policy examples. • Evaluation of effectiveness. • Progress and challenges. • Recommendations.

3. Timeline of U.S. “Systems Change” SYSTEMS CHANGE AS A POLICY MANDATE TIMELINE (VS. CIVIC CULTURAL CHANGE) Americans with Disabilities Act (1990) ↓ Supreme Court’s Olmstead Decision (2001) ↓ Executive Order: New Freedom Initiative (2001) Affordable Care Act / CLASS ACT (2010) Community Living Initiative (2010) Community Living Program(2007)/ Veteran’s Administration (2008) Person Centered Planning (2007) Money Follows the Person (2005) Aging & Disability Resource Centers (2003) Real Choice Systems Change Grants for Community Living (2001) 1990 2001 2010 2003 2005 2007 2008 2011

4. “Systems Change” Operationalized • Operationalized - Defined: • Legal definition from Olmstead decision: • New Freedom Initiative – Executive Branch interpretation. • Open to legal interpretation. • Policy concept: • Goal = achieving compliance with Olmstead decision & NFI. • LTCSS - Centers for Medicaid & Medicare Services statements & directives about HCBS, community integration. • Cultural concepts: • Disability Scholarship: Theoretical and Ideological. • Irving Zola. • Disability activism: Integration and participation. • Disability Rights Movement (also ICF, WHO, UN Disability resolutions). • Aging scholarship and activism: • Aging in place, successful aging.

5. Systems Change Implementation • Main approach is incentivized policy/program re-design: • Federal level: Grants to incentivize state action & facilitate Systems Change. • State level: Matching funds or budgetary reallocations → dedicated funding. • Local level: Possibly stretching of funds, efficiencies? • Key implementation issues: • Stakeholder buy-in. • Incentivizing state and local levels. • Absorption of cultural change to accompany structural change. • Examples of slow movement in U.S. Policy using this legal/federal model.

6. Systems Change – Examples of Specific Mechanisms • Aging & Disability Resource Centers (ADRCs)Community based information and referral for long-term care/independent living. (http://www.aoa.gov/AoAroot/AoA_Programs/HCLTC/ADRC/index.aspx) • Money Follows the PersonFunds for LTC track person regardless of where services are provided (institution or home). (https://www.cms.gov/CommunityServices/20_MFP.asp) • Community Living InitiativeCoordination of care across service facilities – hospitals, skilled nursing facilities, home & community based (includes Veteran’s initiatives).(http://www.aoa.gov/AoARoot/AoA_Programs/HCLTC/NHD/index.aspx) • Systems Change GrantsFunds to support infrastructure development in support of consumer/client integration and self-determination: administration, regulation, program, funding.(http://www.cms.gov/CommunityServices/30_RCSC.asp#TopOfPage)

7. Bridging Case Example - ADRCs • 2010: 325 ADRC sites in 45 states and territories (S/T). • First awarded to 12 states in 2003. • 1/3 of ADRCs are state-wide. • Total federal funding approximately $111 million dollars. • Implementation progress measured through 5 criteria: • Information & Referral • Options Counseling & Assistance • Streamlined eligibility determination • Consumer populations, partnerships, & stakeholder involvement • Person-centered transition support • Quality assurance & continuous improvement. • 80% S&T’s achieved more than 50% outcomes; • 50% more than 75% outcomes; • None are “fully functional” state-wide yet.

8. Bridging Case Example - ADRCs • ADRCs are required to have aging and disability partners. • Partner roles determined by S/T and specific ADRCs. • Aging entities (State Aging agency & Area Agency on Aging) are funded entity – disability subcontracts. • Equity and equality of relationships vary. • Vast majority of disability partners are CILs (Centers for Independent Living). • Infrastructure usually connects partners: • Single-entry point, no wrong door. • For example: technologically linked, shared data bases, co-located professional staff. • Person-to-person, organization to organization links tougher to solidify. • Cultural distinctions and assumptions about aging and disability matter.

9. Systems Change Evaluation • What to evaluate? • Depends on how you define the policy problem. • Measurement evolution: • Customer service, satisfaction. • Program reach and coverage – i.e. number of users (i.e. availability of services). • Added value of ADRCs– “prevention” of over-use, poor quality of life outcomes. • LTC institutional balance – MDS 9, new codes in Medicare/Medicaid institutional data set. • Cost effectiveness? • What about cultural change → participation/integration outcomes? • Not clearly measured.

10. Systems Change Evaluation • Predecessors: Federally financed cost-neutral HCBS: • Medicare Channeling Demonstration (1980s). • Medicaid’s Cash & Counseling Home & Community-Based Care Option (2000 onward). • Olmstead initiated bridging efforts – what’s different?: • Public and private paying consumers/clients. • Compliance with civil rights law vs. federal policy. • Significant push for cultural change. • Not readily reversible. • Not easily achievable. • DNA change or seeking particle diffusion

11. Bridging Progress & Challenges • Progress: • Structural modifications encouraged though Systems Change incentives. • Implementation & Evaluation activities are demonstrating viable pathways and testing bridge’s structural integrity. • Federal advocacy added to grassroots advocacy for professional cultural change. • Challenges: • Determining collective and distinct positive effects, benefits and/or gains for aging, disability, aging with disability populations? • Systems change vs. cultural change. • Sustainability and ongoing advancement in this federally-incentivized policy model. • Does policy change generate cultural change?

12. Recommendations • Production of additional, in-depth evidence paying attention to: • Sample. • Measures. • Data points. • Methods. • Research models and inclusion of stakeholders in research. • Widen policy analysis lens. • Fit LTC Bridging efforts within larger policy frameworks to evaluate initiatives across policy domains. • Long-term care, health care, workforce, housing/transportation, poverty.

13. Recommendations • Identify what else is going on – where other Bridging efforts are and what works. • In the U.S. and internationally. • Add players to bridging endeavors. • Assess stakeholders. • Add Ambassadors. • Design international portals for Bridging: • Knowledge gathering and transfer. • Discussion space. • Promotion of innovation.

14. Michelle Putnam, PhDSchool of Social Work, Simmons College300 The Fenway, Boston, MA 02135, USAemail: michelle.putnam@simmons.edu - or - mputnamphd@gmail.comtelephone: +1.617.521.3956TTY: +1.617.521.2489