Supporting the Needs of Family Caregiver LTCC/Case Management Staff Development Presented by Susan Wenberg Aging and Adult Services MM Department of Human Services 2007 Who is the Family Caregiver? A family caregiver is defined as a spouse, relative, partner, friend or neighbor who has a significant relationship with, provides a broad range of unpaid assistance for an older adult. Caregiver services are designed to address the needs of the caregiver and are reimbursable through EW/AC. CG services are paid out of the care recipient s monthly service cap. Source: Family Caregiver Alliance: National Caregiving Center 2 What s All the Fuss About Family Caregivers? Family caregiving impacts people of all ages, races, ethnicities, lifestyles and incomes. Families provide the majority of long-term care needed by older adults. Are a major unpaid extension of our health and long-term care systems. LTC expenditures for the aging population are expected to triple in the next 40 years. 3 1
What s the Value of Caregiving? Family caregivers are an essential element of long-term care. Estimated value of family caregiving provided to seniors in Minnesota is: $5.03 Billion, or $5,035,000,000 4 Value of Family Caregiving For every 1% decline in the proportion of care provided by families in Minnesota The cost to the state is $30,000,000 per year We can t afford to lose it! Public and Private Financing of Long-Term Care: Options for Minnesota A Report to the Minnesota Legislature Jan. 05 5 Characteristics of Caregivers CG is a 46 year old Baby Boomer Working woman who provides 18 hours of weekly care for her mother who is 77 yrs. of age Ave. length of care is 4.5 years Average income is $35,000/year More than one-third have children under 18 yrs 61% female, 39% male 59% are employed Pays $171/month out of pocket expenses 15% have physical or MH issues, 25% stressed Source: 2004 CG study by National Alliance for Caregiving and AARP 6 2
How Do Caregivers Help? Caregivers play an critical role in chronic disease management and care of older adults: ADLs (Activities of Daily Living) - dressing, bathing, toileting, feeding and mobility IADLS (Instrumental Activities of Daily Living) - transportation, groceries, errands, housework, finances, meals, medications Supervision Arranging care and services, advocating for medical care and insurance coverage Home modifications and assistive devices Emotional well-being and support 7 Getting Results for Caregivers - What do they want? To have the skill and knowledge to provide the care To stay healthy and continue their current lifestyle To direct the care and make informed decisions To provide quality care and support as long as they can 8 Caregiver Services and How They Can Help Information and Assistance Caregiver Training and Education Caregiver Respite Caregiver Coach/Consultant Resources and help needed to provide care and make informed decisions. Builds skills, knowledge and confidence needed to provide care & balance their own lifestyle. Provides a short-term break to caregivers. In-home, out-of home or consumer directed. One-to-one coaching for caregivers wanting higher levels of performance, learning and satisfaction. Empowers caregiver; goals & action plan. 9 3
Community Resources for Supporting Caregivers Long-Term Care Consultation, Assessment and Planning Supports Available Through AC/EW Area Agencies on Aging, Title IIIE Older Americans Act services, Senior Linkage Line Voluntary and quasi-formal agencies/organizations Living-at-Home/Block Nurse Programs, parish nurse, senior volunteer programs, faith-based organizations, non-profit social services and others. 10 Caregiver Services and Supports Available Through AC/EW Respite Care Adult Day Services Caregiver Training, Education and Consultation Includes caregiver coach/consultant Supports that benefit family caregivers: Examples: Environmental Modifications and Adaptations, Specialized Equipment and Supplies 11 Respite Services Definition: Provides relief to the unpaid caregiver on a short-term basis. Service Includes: Individualized supervision, personal care or nursing care in the absence of primary caregiver for a functionally impaired person. Provider Options: In-home option Out-of-home option New self-directed option 12 4
In-home Respite Care Providers Registered or licensed practical nurses. Home health aides. Personal care assistants or other professionals; or Persons able to demonstrate to the case manager that they can provide the care on a temporary shortterm basis, includes families, friend or neighbors. Can also utilize volunteer respite workers. Match the needs of care recipient with provider type. Negotiate payment rates accordingly. All licensing and certification standards and supervision required by licenses/certifications applies. 13 Out-of-home Respite Care options Licensed adult foster care home. Medicaid certified hospital, a Medicaid certified nursing facility. Currently registered housing with services establishment when services are delivered by a licensed home care agency. Out-of-home respite care may also be provided in a private residence that is identified by the recipient or their legal representative and approved by the local agency case manager. 14 Consumer Directed Respite The consumer is in charge of the services they receive to remain independent including: What help is needed within an approved monthly budget Who provides the care perhaps a friend, neighbor, or family member When the care is provided How much responsibility they want Targeted to all older adults, particularly those with unmet needs, cultural or language barriers, or areas with provider or worker shortages. Informal caregivers (family, friends and neighbors) provide respite. Excludes minors. Bill service as CDCS. 15 5
Caregiver Education and Training Provided to an informal caregiver who provides direct and ongoing services to individuals served by this waiver. Training includes instruction about treatment regimens, disease management and caregiver roles use of equipment specified in the plan of care Counseling includes coaching guidance or instructions directly related to providing care to the person on the waiver. 16 Caregiver Education and Training Standardized Curriculum Counties contract with caregiver education providers for AC/EW. Contact your AAA to identify education programs in your area. 17 Caregiver Education and Training Providers include Health care professionals who have had at least one year of experience in providing home care,or long term care service to the elderly, or at least one year of experience providing training or education to caregivers of elderly persons. Vocational and technical colleges Certified nursing assistant training National chapters of chronic disease organizations Alzheimer s Association, Minnesota Stroke Association, Struthers Parkinson Center 18 6
Family Caregiver Assessment A systematic process of gathering information that describes the caregiver s situation and identifies particular problems, needs, resources and strengths of the CG. Focuses on the CGs perspectives, culture and assistance desired; seeks to maintain CG health and well-being; See LTCC Part P. CG Assessment Caregiver Assessment: Principles, Guidelines and Strategies. FCA, 2006. 19 Assessing Family CG Needs Assessment should address the following: CG Context: values, relationship to CR, physical environment, financial, employment status, etc. Care Recipient s needs: frequency and intensity of care, cognition, behavioral needs, medical tests, procedures CG s health: health status, depression or stress, quality of life, perceived challenges and benefits Assets, strengths and informal support network Services received Support and services desired 20 Assessment Goal: Connecting Caregivers with the Help They Need Focus on the needs of the caregiver, not only the needs of care recipient. Eliminate prior personal biases what caregivers should be able to do and for how long. Move away from trying to fit people into preexisting "slots" in pre-designed models of care. Move towards flexible wrap-around supports; individualized and customized help. 21 7
How Can LTCC and Case Managers Help Caregivers? Roles: Identify, teach, listen, encourage and inform Identify caregivers early on Provide on-going assessment of caregiver needs and wants Identify readiness to accept help; continue to track; encourage early acceptance of help; sell the help Encourage caregivers to do on-going planning and make decisions about future needs and options Connect with good information and help 22 Example #1: Judy needs respite on Thursday nights The Slotting Approach We don t have any agencies/individuals that provide evening in-home respite. We can set you up with adult day or outof-home respite. Wrap-Around Approach Case manager contacts variety of agencies to develop requested services. Senior Companion is identified who can provide respite every Thursday night. 23 Example #2: Janet Needs Help Transferring her Dad Slotting Approach Case Manager suggests nursing home placement where they have the staff and equipment to transfer dad safely. Wrap-Around Approach Case Manager works with CIL to get modifications to the bathroom. Authorizes hospital bed and lift through lease to buy. 24 8
CG Assessment (Cont d) Allow adequate time for talking with caregiver; contact by phone as needed. Stay connected, provide follow-up or find those who can. Refer to specific organizations, if needed. Let your local Area Agency, county or State DHS staff know about areas where services are lacking (not accessible or available to the extent needed). 25 Examples: LTCC Assessment Questions What would make things easier for you as a caregiver? What would you like others to help with? Who will you let help you? What would help keep you happy and healthy? What are your goals for yourself and the person you care for? 26 Next Steps: Effective Planning of Support for the Caregiver What will your approach to service planning be with the caregiver? What is the best way to help the caregiver? What is he/she willing to accept and when? Were you able to help the caregiver? 27 9
Minnesota s Family Caregiver Support Program Minnesota has developed a five point strategy for supporting family caregivers: #1 Developing an array of service options to address the changing needs of caregivers. New respite options overnight, evening, culturally specific New caregiver coach service, consumer directed models #2 Establishing easy access to information and service options, regardless of age or income. Multiple access points for entry and referral Examples: clinics, employers, LTCC/Case managers, providers and faith-based organizations 28 Minnesota s Family Caregiver Support Program #3 Integrating services across funding streams. Caregiver services are available and utilized across waivers, Alternative Care, Title IIIE, state funded grants, and private pay resources #4 Supporting working and long distance cgs On-line training & education Senior LinkAge Line, consumer decision making tool, virtual caregiver support program #5 Partnering with health care professionals for better management of chronic disease Increase physician referral to caregiver services Co-locate caregiver services at clinic settings (information, assistance and cg coaches) 29 Minnesota s Family Caregiver Support Program Locally caregiver services are growing through collaborative development: Area agencies, Title III providers, health plans, counties, Eldercare Development Partners, faith-based and voluntary organizations and consumers. Minnesota s spending on family caregivers: Approx. $ 5.9 million Federal Older Americans Act $2.1 million EW and Alternative Care.43 State Respite/Community Service $1.3 Local/Private $ 2.1 $ 5.9 million More than 40,000 caregivers were served through publicly funded programs in 2006. Many more are served through faith based and voluntary organizations. 30 10
Area Agencies on Aging New Federal Title IIIE National Family Caregiver Support Program provides: Information and assistance Caregiver training, education and consultation Consumer directed options underway Respite - in-home and out-of-home Supplemental Services home modification, technology (on a limited basis) Call your local Area Agency on Aging at 1-800-333-2433 to learn what s available in your area. 31 Resources Senior LinkAge Line: 1-800-333-2433 www.minnesotahelp.info www.mnaging.org/caregivers http://www.caregiving.org/ http://www.nfcacares.org/ Bulletins: #01-25-09; #03-25-06 Disease associations Comments, questions email or call me: sue.wenberg@state.mn.us or (651) 431-2587 32 11