Supporting Caregivers Gail Koser, Acting Director of Policy, Research and Legislative Affairs New York State Office for the Aging

NY Connects: Choices for Long Term Care Established in 2006 by NYS Office for the Aging and the Department of Health. NY Connects is the driving force behind New York’s effort to rebalance the long term care system. Federally recognized by Administration on Aging (AoA) and Centers for Medicare and Medicaid Services (CMS) as New York State’s ADRC.

Free, one stop resource for information on long term care and linkages to services. Serves older adults, people of all ages with disabilities, and caregivers. Provides objective information on the full range of long term care services available and empowers individuals to make informed choices. Provides a seamless system of care. NY Connects: Information & Assistance

NY Connects Statewide Resource Directory The NY Connects website, provides information about long term care, links to local NY Connects programs and includes a State Long Term Care Resource Directory. Contains over 19,000 comprehensive listing of services and supports. Includes long term care information such as respite and other caregiver supports and services for all disabled populations, as well as mental health services and programs serving the developmentally disabled population.

Utilization: Volume of Program Contacts To date, from July September 2010, there have been 481,524 reported contacts to local programs. On average, the program responds to roughly 37,000 inquiries per quarter.

User Profile

Top Ten Categories of Information Provided October 2009 – September 2010 CategoryPercentage 1. Consumer and Caregiver Supports21% 2. Home Based Services20% 3. Residential Housing Options & Support19% 4. Insurance/Benefits Information and Counseling19% 5. Transportation10% 6. Nutrition Specific and Wellness5% 7. Facility Based Services3% 8. Home Modification and Repairs3% 9. Support Groups/Counseling2% 10.Protective/Preventative1%

2008 NY Connects Program Satisfaction Survey 94% reported an overall satisfaction with NY Connects. 90 +% indicated the need for and importance of program. 81.3% of the respondents were either consumers or their relative. Population Using NY Connects

2008 Caregiver Services Survey—Aging Services Network According to the survey, administered directly to the caregiving population served through the aging services network in NYS, the top three supportive services identified were:  Information and Assistance, i.e. NY Connects, (72%)  Respite Care (47%)  Caregiver Counseling, Training or Education (43%).

2008 NYSOFA Caregiver Services Survey—What Was Most Helpful Further, the survey also measured which services the caregivers found most helpful. Caregivers reported that the information and assistance was most helpful (42%), followed by caregiver training or education (25%), and respite care (21%). Most Helpful Services to Caregivers

NY Connects in the Community

Long Term Care Councils: Vehicles for Positive Change Analyze and identify needs in the long term care delivery system; develop strategies for improvements. 100 percent of counties participating in NY Connects have long term care councils. Over 1,600 members across local programs; 80 members on the State Long Term Care Advisory Council. Members include consumers, caregivers, government representatives, elected officials, LTC service providers, associations, ILCs, advocacy groups.

Long Term Care Councils Impacting New York Transportation Affordable, Accessible Housing LTC Workforce Shortage & Poor retention Caregiver Support & Respite Care Coordination of Services Public Education on LTC Accessibility of Services  Bus routes established  After-hours transport  Enriched housing program  Assisted living beds  Aging/disability friendly  Housing design  Mobile social adult day programs  Home care worker training and retention programs  Home delivered meals to the under 60 population Gaps and Barriers Identified Examples of Reform Efforts

Caregiver Supports Gaps and Barriers Identified Outcomes Allegany County Caregivers unaware of available services /and or how to identify themselves as caregivers Information: The Allegany County Caregiver Coalition created a brochure that describes available prescription assistance resources and programs. Collaboration: LTCC has partnered with the WNY Alzheimer’s association to train eight respite volunteers in Dec 2010 to provide respite for caregivers. This is a joint effort by partners in the Caregiver Coalition. Delaware County Service accessibility Information: Caregiver Support Committee created a visual Game Board to assist agencies/organizations to identify services. Development - Developing a Social Adult Day Care site in Walton, NY. Monroe County Caregivers unaware of available services Collaboration: Create electronic caregivers guide for the Finger Lakes Region. Guide will be developed through a collaborative effort between Monroe County OFA and the Greater Rochester Collaborative. Expected launch of guide is Spring Long Term Care Councils: Impacting New York

Funding Helps Expand Consumer & Caregiver Supports AOA and CMS have provided funding to: divert costly institutionalized care, improve care transitions to avoid unnecessary, re- hospitalizations improve access to LTC services. NY Connects has been able to expand to include five new program areas.

Community Living Program (CLP)  Consumer directed model  Reduce costly institutional care  Reduce Medicaid spend-down  Supports Caregivers  Reduces Financial Burden  Reduces Caregiver Burn-Out The main goal of the CLP is to help individuals at risk of institutionalization and Medicaid spend down maintain their independence and remain in the community.

Program Evaluation Results Nursing Home Placement: 86% of 93 participants, all at measured risk for nursing placement, did NOT enter a nursing home. Medicaid Spend-Down: 83.5% of 93 participants did not spend down to Medicaid.

CLP Demonstrates Cost Savings Projected Monthly Cost 93 Participants Nursing Home $643,281 Projected Monthly Cost 93 Participants Medicaid- supported Home Care $317,469 Actual Monthly Cost 93 Participants CLP $ 232,500

Services Equate to Caregiver Support

Aging and Disability Resource Center Grant Programs: Community Supports Navigator (CSN) Community Navigator Supports Program The Community Supports Navigator uses trained volunteers who provide coaching support and advocacy for an older adult with a chronic disease(s) and their primary caregiver(s) who is transitioning from a hospital in-patient stay to the community. In addition to linking consumers/caregivers to NY Connect services, volunteers provide coaching assistance, guidance, and advocacy with non- medical post-discharge tasks, such as transportation, medication supports, and assistance with post-discharge follow up for a period of 90 days. Care Transitions Intervention – Plus The evidenced-based CTI-Plus program builds upon the established CSN program by expanding the target population to all Albany County residents and their caregivers, regardless of payor source. The evidenced-based CTI- Plus program aims to further reduce preventable rehospitalizations and institutionalization by providing support beyond 30 to 90 days.

Aging and Disability Resource Center Grant Programs: Options Counseling An interactive and individualized process whereby consumers and caregivers are assisted in evaluating all of their long term care options and are supported in making a decision based on their values, needs and preferences. It encourages individuals/ caregivers to look beyond immediate needs to plan for the future. Also encourages individuals to examine the outcomes of their decisions.

Medicare Improvements for Patients and Providers Act (MIPPA) This program will strengthen the collaboration between NY Connects and HIICAP to expand the capacity of NYS to reach low income Medicare recipients to:  provide application assistance for low income subsidy (LIS) and/or a Medicare Savings Plan (MSP);  provide information to Medicare beneficiaries on new wellness and prevention benefits;  conduct outreach activities to increase awareness of low income subsidies and new Medicare prevention services.

We Value Caregivers in NYS--New York State Family Caregiver Council Composition  Includes caregivers across the age and care spectrum, community advocates, academic experts in caregiving issues, and New York State government agencies. Mission  Provide guidance, advice, and recommendations that will enable the state to develop policies and programs that support caregiving by reducing barriers and enhancing support for individuals who provide care for friends, family or community members of all ages and all levels of ability.

Findings from the Family Caregiver Council With more than 2.2 million caregivers, NYS ranks third in the nation in number of informal caregivers. These caregivers provide over 2 billion hours of special care to family members with significant needs for assistance. There are 297,239 children living in grandparent- headed households in New York, or about 6.3 percent of all the children in the state, and there are 111,806 children living in households headed by other relatives.

Lifespan Respite Initiative in New York State The creation of the Statewide Caregiving and Respite Coalition of NYS (SCRCNY) in 2008 was the first step in positioning NYS to apply for a Lifespan Respite Grant in Coalition brings together a diverse mix of providers and caregivers to learn from one another and inform and educate policymakers and elected officials. The goal of the NYS initiative is to expand and strengthen SCRCNY to build a caregiver support services network and develop a statewide coordinated system, increasing access to respite services for families across age/disability spectrums, including access to emergency services.

First Steps of Lifespan Respite A core team has formed that includes NYSOFA, SCRCNY and NY Connects. A “think group” of people from across the state who have indicated an interest in lifespan respite will work to define respite and the caregivers who will be served. From this “think group” SCRCNY will form an Advisory Group to advise SCRCNY on program and policy issues.

Developing a Respite Database SCRCNY will develop a respite data base using data from the NY Connects database as the first source of information. Members of the SCRCNY Advisory Group will be enlisted to further identify respite programs across the state. SCRCNY and NY Connects will work closely to share respite information.

Providing Respite to Caregivers Makes Economic Sense In New York State it is estimated that at least 80 percent of community-based long-term care for persons of all ages is provided by family or other informal caregivers. This voluntary assistance reduces public spending for long- term care supports and services. An estimated annual economic value of informal care provided by caregivers served by NYSOFA/AAA caregiver support programs is estimated to be close to $832 million per year if the work of these caregivers had to be replaced by paid home care workers.

Economic Contribution of Older Adults $3.6 billion/$43.2 billion a year is paid to New Yorkers through Social Security and 65% of this amount is received by older residents—much of which is used to purchase goods and services. 72% of older adults own their own homes and pay real property taxes. Nationally, net worth for householders 65 years and over is $108,885 in contrast to householders under the age of 35 is $7,240. (Median for all age groups is $55,000.

Older Adults--Contribution to their Communities Tremendous source of social capital helping to solve pressing local problems. Older New Yorkers provide an estimated 47.9 million hours of service to their communities— estimated value of $1.3 billion. Contribute to Livable Communities for people of all ages. Evaluate communities and actively plan and implement creative solutions to such issues as walkability, housing, transportation, safe neighborhoods