Federal Policy Implications for Dementia Care Katie Maslow Institute of Medicine Age & Disabilities Odyssey Conference June 21, 2011

Huge Array of Federal Policies and Policy Issues in Play Right Now Health Reform – ACA – P.L What does the law say? What programs were authorized? What agency or agencies are writing the regulations? Did the regulations already come out? Where can I find them? What do they say? What does that mean? Or if they haven’t already come out, when will they be out? How will I know?

Policy Issues in Play Right Now ACA programs: ACOs/Shared Savings, Medical Homes, Pioneer Health Homes, Annual Wellness Visit, Community First Choice Options, Bundled Payments Pilot, State Demonstrations To Integrate Care for Dual Eligibles, HCBS State Plan Option, Independence-at- Home, Pay-for-Performance, CLASS program, ADRCs, State Balancing Incentive Payments Program, Community Health Teams, Reducing 30-Day Hospital Readmissions, SNPs, FQHCs, Money Follows the Person Rebalancing Demonstration, Community-Based Care Transitions Program, Medicaid Health Homes for Chronic Conditions, Medication Management Services, Patient Navigator Program, Multi-Payer Advanced Primary Care Practice Demonstration, Patient Centered Outcomes Research Institute, Community Transformation Grants, Partnership for Patients, ……………………………………………………….

Policy Issues in Play Right Now Challenges to ACA Legislative challenges –Repeal the law –Repeal certain provisions –Revise certain provisions Court challenges –Repeal the law –Repeal certain provisions

Other Policy Issues in Play Right Now Pre-ACA laws, regulations, and programs Federal Budget/Continuing Resolutions Deficit Reduction/Debt Limit State budget shortfalls – Medicaid cuts – dollars, eligibility, services – Cuts in other State-funded program dollars, eligibility, services – End of the federal stimulus funding Confusing mix of financial, political and ideological objectives, arguments, and positions

Providing Dementia Care and Continuing to Hope for a Research Breakthrough Looking for ways to prevent or cure Alzheimer’s disease and other dementias Looking for ways to delay onset of symptoms and/or slow progression from the mild to the moderate stage and from the moderate to the severe stage Providing care for people who have dementia and support for these people and their family and other caregivers

What To Do To Improve Dementia Care?

Dementia Care Occurs in Many Health Care, Residential Care and HCBS Settings People with dementia constitute about : One quarter of older hospital patients Half of all nursing home residents Half of all older assisted living residents Half of all older adult day services participants One quarter of Medicare/Medicaid home health care recipients Federal policies that pertain to any of these settings are potentially relevant to dementia care

Dual Eligibles with Dementia Among all dual eligibles, 54% had Alzheimer’s disease or other dementias in 2005, including: 67% of dual eligibles receiving SNF care 48% of dual eligibles receiving non-SNF nursing home care 27% of dual eligibles receiving Medicaid aged or disabled waiver services* Federal policies that pertain to dual eligibles are potentially relevant to dementia care * Walsh et al. Cost Drivers for Dually Eligible Beneficiaries: Potentially Avoidable Hospitalizations from Nursing Facility, Skilled Nursing Facility, and Home and Community-Based Waiver Programs, Aug, 2010.

What’s Needed To Improve Dementia Care? 1.Effective detection and careful diagnostic evaluations 2.Information, “training” and support for family caregivers 3.Ongoing medical management 4.Avoidance of unnecessary hospitalizations and ER visits 5.Effective connection of people with dementia and their families to community services and care coordination 6.Professional and service provider training

Effective Detection and Careful Diagnostic Evaluations Signs and symptoms of dementia are frequently not detected in most care settings Most people with dementia still do not have a formal diagnosis of their condition Some – perhaps many - people have an inaccurate diagnoses Better care can’t happen without effective detection and careful diagnostic evaluations

Information, “Training” and Support for Family Caregivers Many family caregivers do not have information that would help them provide care effectively Most family caregivers do not have the support they need to provide care without risking their own physical and emotional health Many families do not work together in ways that would improve care and reduce stress But we have effective ways to “train” and support family caregivers and help them manage care and avoid crises

Ongoing Medical Management Some people with dementia receive ongoing medical management, including management of co-existing medical conditions, but most probably do not We lack a widely accepted understanding of what good, ongoing medical management would mean More importantly, we lack an understanding of the value of ongoing medical management

Avoidance of Unnecessary Hospitalizations and ER Visits Compared with other people of the same age, people with Alzheimer’s and other dementias have: – 3 times more hospitalizations – 4 times more hospital days – almost 3 times more ER visits * * Porell, Medicare Chronic Condition Warehouse, 2009

Avoidance of Unnecessary Hospitalizations and ER Visits (cont.) ER visits and hospital stays : Are often very difficult for people with dementia and their families Often result in greater cognitive impairment, reduced functioning, and premature nursing home placement Can sometimes be avoided by better medical management and easy family caregiver access to someone who can help them cope with a care crisis

Effective Connections to Community Services and Care Coordination Many people with dementia and their family caregivers are never connected or are connected too late to community services that could help them Some needed services are not available in some communities Some needed services are not affordable for many people with dementia and their family caregivers Care coordination can link them to available services and funding Cuts to Medicaid and other state funding for services are reducing what is available in many states

Professional and Service Provider Training Among the many health care and social service professionals and other service providers who interact with a person with Alzheimer’s or another dementia, most still lack training in Alzheimer’s and dementia care But excellent training programs, materials and mentors are readily available How can we increase the number of trained professionals and other service providers?

Increased Detection and Diagnosis is an Essential First Step Detection and diagnosis increases the likelihood that : –Family caregivers will have access to information, training and support –The person will receive ongoing medical management –Hospital and ER staff members will at least know that this is a person with Alzheimer’s or another dementia –The person and family will be referred to community services that can help them

Looking at ACA Programs Through the Lens of Dementia, What Seems Helpful? ACA Programs? Annual Wellness Visit? ACOs? Medical Home?Health Home? Care Transitions Program? Dual Eligibles? Independence at Home? Pay-for-Performance? Reducing rehospitalizations? ADRCs? Other

Coming Soon -- A National Plan Advisory Council on Alzheimer’s Research, Care, and Services –10 Federal agencies have a representative –12 non-Federal representatives will be selected –Goal: To provide advice to the Secretary of DHHS on how to prevent or reduce the burden of Alzheimer’s disease and related dementias on people with the disease and their caregivers

The Minnesota Model Preparing Minnesota for Alzheimer’s: the Budgetary, Social and Personal Impacts Accessable at : ntPage