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Supporting Family Caregivers

Staff DevelopmentPresented by

Susan WenbergAging and Adult Services/DHS

2005

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Four Kinds of People In This World

Those who have been caregiversThose who currently are caregiversThose who will be caregiversThose who will need caregivers

Source: Rosalynn Carter Institute for Caregiving

www.rosalynncarter.org

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Who is the Family Caregiver?

A family (or informal) caregiver is a spouse, family member, friend or others who provides unpaid care for a frail older adult.

Caregiver services focus on the needs of the caregiver (not the recipient) and are reimbursable through the waiver.

Caregiving impacts people of all races, ethnicities, lifestyles and incomes.

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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

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How Do Caregivers Help? Caregivers play an essential role in helping

older adults manage chronic care:•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

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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:

$4.58 Billion, or

$4,580,000,000

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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

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Benefits of Supporting Family Caregivers

√ Increase knowledge, skills and confidence of family caregivers in providing care

√ Prolong the length of time that families care for older adults

√ Improve the quality of life of older adults; most older adults prefer to receive care from family or friends

√ Alleviate labor shortage issues√ Provide cost savings $$

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A Caregiver’s Story Debra is a 51 year old baby boomer, single mom, who

works full-time as an electrician and cares for her 12 year old son with special needs.

She also cares for her 88 year old mom who moved in with her after suffering a heart attack.

She dealing with her son’s school, her mother’s health and doctor appointments, as well as her job.

“On a good day I would get home at 7 pm, make dinner, help with homework, and then settle in at night. I had periods of crying, not knowing what to do or where to turn, I was desperate for help!”

Source: Pioneer Press Newspapers – October 9th, 2005

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Minnesota’s Family Caregiver Support Program

The DHS and the Minnesota Board on Aging have developed a statewide strategy to preserve, enhance

and prolong the role of family caregivers. VISION: To build capacity that affects lives by improving the

quality and duration of the care provided by family caregivers.

Impact: To keep older adults living in the community longer

and reduce LTC expenditures from facility-based care.

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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. $12.1 Million

•Older Americans Act $2.4 million•Waiver/AC $ •State Respite/Community Service $1.0 million•Local/Private $ .445• In-kind $ .855

More than 44,000 caregivers were served through publicly funded programs in 2004. Many more are served through faith based and voluntary organizations.

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Minnesota’s Family Caregiver Support Program

Minnesota has developed a five point strategy to support family caregivers:

#1 Develop a diverse menu 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 Promote easy access to information and service options, regardless of age and income

• Multiple access points for entry and referral. • Examples: clinics, employers, LTCC/Case

managers, providers and faith-based organizations

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Minnesota’s Family Caregiver Support Program

#3 Integrate services across funding streams • Caregiver services are available and utilized across

waivers, Alternative Care, Title IIIE, state funded grants, and private pay resources

#4 Support working and long distance cgs • On-line training & education• Senior LinkAge Line, Consumer decision tool, virtual

caregiver support program

#5 Partner 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)

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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

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Assessment Goal: Connecting Caregivers with the Help They Need

Focus on the needs of the caregiver and not the 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 pre-existing "slots" in pre-designed models of care.

Move towards flexible wrap-around supports; individualized and customized help.

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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 out-of-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.

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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.

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Things to Know Before Assessing Caregivers

Support the expert caregiver role:

•Focus on caregiver goals and whether needs are being addressed.

•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.

•Help them identify a network of support.

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How Can LTCCs and Case Managers Help Caregivers?

Key Role: 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.

Encourage caregivers to do on-going planning and make decisions about future needs/options.

Connect with good information and help

Give feedback of needs and service gaps to providers, DHS or Area Agencies on Aging.

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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?

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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®

Faith-based initiatives – Faith in Action, parish nurse programs

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Caregiver Services and Supports Available Through AC/EW

Respite Care

Adult Day Services

Caregiver Training, Education and Consultation

Home Assessment and Modifications

Functional Assessment and Adaptive Equipment

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Formal Services with a Respite Outcome

Companion Services – non-medical care, supervision and socialization. Not billed as respite but helps caregivers.

Home Care/Personal Care Assistance/Rehab Therapies

Transportation

Chore

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Respite ServicesDefinition:

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 optionOut-of-home option

New self-directed option

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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 short-term basis.

In home respite care providers who are required to be licensed or certified must meet the licensing or certification standard specific to the level of care they are providing and receive supervision as required by their respective license or service standard.

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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.

Group respite is an unlicensed service that provides companionship, supervision, socialization and meals. It is not billable under EW/AC but provides an alternative form of respite. Available through churches, senior housing and faith-based orgs.

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New Respite Option

Consumer Directed Community Supports

• Approved in Fall 2004 for waivers.

• For persons with unmet needs, cultural or language barriers, or areas with provider or worker shortages.

• Informal caregivers (family, friends and neighbors) provide respite. Excludes spouses and minors.

• Bill service as CDCS.

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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.

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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.

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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 and

• Certified nursing assistant training

• National chapters of chronic disease organization

• Alzheimer’s Association, Minnesota Stroke Association, Struthers Parkinson Center

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Adult Day Services

Coordinated set of services• Nutrition• Health• Social service

Regularly Scheduled• Two or more hours per day• One or more days per week• Bath optional

Two options for development • Licensed Family Adult Day Services (FADS) – not

corporate• Center-based adult day services

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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.

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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?

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Resources

Senior LinkAge Line: 1-800-333-2422 www.minnesotahelp.info Www.mnaging.org/caregivers http://www.caregiving.org/ http://www.nfcacares.org/ Bulletins: #01-25-09; #03-25-06 Disease associationsComments, questions email or call me:

sue.wenberg@state.mn.us or (651) 431-2587