1. National Family Caregiver Support Program
How to Administer the Program

2. Learning objectives Program intent Who program serves
Minimum service requirements
Program Restrictions
Eligibility
Paperwork
Data collection

3. What the program is all about
PROGRAM INTENT
What the program is all about

4. Focus on the CAREGIVER Informal or Family Caregivers
Caregiver definition: “A person who is helping care for another individual, enabling them to remain living in the community.”
Not focused on the person who is unable to care for themselves
Most consumers seen at your agency have a caregiver or are a caregiver
Train all staff to seek out caregivers who could utilize NFCSP
The intent of the NFCSP is to offer support to caregivers in order to help them continue providing care in the community for as long as possible.
The person needing care – care recipient – is the focus at doctor’s offices and everywhere else, but NFCSP Is the one program that focuses on the caregiver.
Different from other programs – this is important because it is easy to slip into focusing on what the CR needs.
Because most of the consumers contacting your office are caregivers or have caregivers it is vitally important that ALL of your agency staff are aware of NFCSP. You as the caregiver coordinator will not see everyone who walks through the door so it really is necessary to train all staff about the program and how to refer potential enrollees to you.

5. The caregiver’s health is important
Caregivers have higher stress levels and are more likely to suffer health problems.
Helping the caregiver improves their ability to provide better care for their loved one, and for a longer time.
It is easy to focus on the person receiving care instead of the caregiver, but that is not the purpose of the NFCSP.
The purpose of NFCSP is to support the CAREGIVER
which in turn will support the care recipient.
Why support the caregiver when the care recipient is the one needing care? Healthy caregivers mean healthier care recipients. Stats from the Journal of the American Association of Nurse Practitioners:
Caregivers without proper support suffer health problems – increased cardiovascular problems, lower immunity, slower wound healing, higher level of chronic conditions, less preventive care and more likely to cope with stress by using drugs, alcohol or nicotine.
Care recipients also face consequences when their caregiver does not have proper support – more doctor’s visits, more hospitalizations, earlier nursing home placement and family relationships tend to deteriorate.

6. Examples of serving the caregiver
Neighbor looking for funds to pay for friend’s hearing aids
What else is this “friend” doing?
Are there other programs that can pay for hearing aids?
This person does not think he/she is a “caregiver.”
Daughter asking for funds to pay for Dad’s medication.
What would help the daughter relieve stress?
Husband asking for money to pay for someone to style his wife’s hair
Is this truly something that will decrease stress for the caregiver?
What else might the husband need?
Hearing Aids – woman also cleans house, picks up groceries and brings him meals. Starting to feel stressed about it. She IS a caregiver!! Offer to help relieve stress by paying for her neighbor’s housecleaning or grocery delivery service. Find another revenue source to pay for Hearing Aids – refer to I&A.
Daughter and medication – refer to EBS for help with medical bills, then talk about her caregiving duties and cover something else to reduce stress.
Husband and hair – A beautician might just be the best thing for this person, but be sure to assess other areas of stress. Once he hears that he could have a 3 hour golf outing every month he may find a family member/friend do his wife’s hair and use the program to support his own social needs.
It is MOST important to have a conversation with these potential enrollees to discover what things are the most stressful for them and the best ways to relieve that stress.

7. WHO DOES THE PROGRAM SERVE?
Intended Program Participants

8. NFCSP program policy describes the three types of caregivers that can be served:
1. Family members and informal caregivers, including friends and neighbors
2. Grandparents and other older adults who are taking care of a child who is 18 years old or younger
3. Grandparents and other older adults who are caring for an adult who is disabled

9. Family Caregiver Defined (Section 11.2)
“A caregiver is a person who is doing something for someone else that contributes to their ability to remain living in the community.”
The person being cared for needs to be age 60+ OR have a dementia diagnosis (any age).
The caregiver can be any age.
The caregiver may be a friend or neighbor – they do not have to be “family.”
The caregiver does not have to live with the person.
Services provided by NFCSP can include most things the caregiver needs help doing, including picking up medication, grocery shopping or providing transportation for the person. It can also pay for house cleaning, yard work or personal care services tasks, such as bathing

10. Grandparent or Other Relative Caring for Children
10% of NFCSP allocation can be used for grandparent or relative caregivers (GRC).
To qualify for NFCSP, these caregivers:
Must be age 55+
Must be the child’s primary caregiver
Must live with the child
May have legal custody, but it is not required
Must be related to the child
These are older adults caring for children age 18 and younger.

11. Older Adults Caring for Disabled Adult Children
Older adults caring for adult children (age 19 to 59) who have a disability also qualify for NFCSP.
These caregivers:
Must be age 55+
Must be the primary caregiver
Must live with the disabled adult
May have legal custody, but it is not required
Must be related to the child – CAN be the parent
The disability must substantially limit the ability to care for themselves
This group is not included on the 10% maximum for GRC.

12. MINIMUM SERVICE REQUIREMENTS
What the program can pay for

13. Five Service Requirements
Five focus areas must be available to caregivers in your county
Information to caregivers about available services
Assistance to caregivers in gaining access to services
Individual counseling, support groups and training for caregivers
Respite care to temporarily relieve caregivers from their responsibilities
Supplemental services that complement care provided or make it possible for the older adult live safely in the community
The Minimum Service Requirements spell out what every county is required to have available for the caregivers we have defined. It is also your guide to what funds can be spent on.
These services need to be available – but not necessarily by your agency specifically.
Everything listed as examples of the service areas can be paid for with NFCSP funds.

14. Information about available services
Educational presentations at various community sites
What is Caregiving
Caregiving Resources
Managing Stress
Dementia/Memory Loss
Marketing materials
Brochures and Flyers
Resource Guides
Support Group or Caregiving Class Information
The first is Information about Available Services – This is letting the public know about what you have to offer as well as educating the public about caregiving and related topics.
You are giving general information to a broad audience.

15. Information about available services
Stories or articles about caregiving-related topics
Your newsletter
Local newspapers
Newsletters of partner agencies
Vendor tables or exhibits
Health Fairs
Conferences
Community events
The first is Information about Available Services – This is letting the public know about what you have to offer as well as educating the public about caregiving and related topics.
You are giving general information to a broad audience.

16. Information about available services
Website
Caregiver Corner
Social Media
Facebook
Twitter
Advertisements
Newspapers
Radio TV
The first is Information about Available Services – This is letting the public know about what you have to offer as well as educating the public about caregiving and related topics.
You are giving general information to a broad audience.

17. Assistance in gaining access to services
Information to Caregivers = broad spectrum
Helping Caregivers Gain Access to Services = personal connection
Listen to their story – needs assessment
Help them understand their options and form a plan of action
Visits may be in the office, on the phone or in their home
Follow up is important!
This is the “core” of your work – meeting with families and helping them get the services they need.
Be sure to offer home visits! You can learn a lot by observing them in their home environment.
You may actually help the caregiver set up respite or help them order some adaptive equipment.
Plan a follow up call to be sure they are receiving the services they need.

18. Individual counseling, support groups and training
Support groups: Caregiver Café’s, Memory Café’s, Telephone Support Groups, Online Support Groups
Training - Powerful Tools for Caregivers
Online Trainings
Caregiver Teleconnection
Books and DVDs
Any other type of education that benefits the caregiver
Again, these services do not have to be coming directly from your agency. If you don’t offer a support group, be sure to partner with another agency that does and make direct referrals. Same for Powerful Tools or Conferences.
Know what is available, create a relationship with the other agencies who offer these services and refer caregivers to them.

19. Individual counseling, support groups and training
Informal counseling - talking/listening to the caregiver in your office
Professional counseling
Caregiver Conferences
Alzheimer’s Conference
Other events geared towards caregiving
*For reporting purposes, counseling means professional counseling.
Again, these services do not have to be coming directly from your agency. If you don’t offer a support group, be sure to partner with another agency that does and make direct referrals. Same for Powerful Tools or Conferences.
Know what is available, create a relationship with the other agencies who offer these services and refer caregivers to them.
Don’t forget the Alzheimer’s Association’s telephone support group – the last Tuesday of the month at 10:00

20. Respite care
Respite care temporarily relieves caregivers from their responsibilities
3 Basic Types of Respite care
Adult day care
In home visits
Short-term institutional stay
Services that are considered Respite:
House cleaning
Shopping
Meal preparation
Raking and snow shoveling
Respite care is the most common service provided by NFCSP. While respite is important, it is NOT the only thing a caregiver may need or want.
Please be open to providing the service/item that each caregiver will find most helpful. Even though you may feel respite is best, it is up to the caregiver to determine what they want. Some caregivers will never be open to leaving their loved one with someone else. In that case, help them discover other things that can give them some relief.
TEMPORARY – 112 hours/caregiver/year

21. Supplemental Services
Things that make a caregiver’s job easier and less stressful; and complement the care provided
Emergency Response Systems
Safe Return and Project Lifesaver
Transportation
Adaptive equipment/assistive technology
Activities to keep the care recipient engaged
Activities for the caregiver
*Use the needs assessment to help determine greatest needs
This category is kind of a catch-all and allows you to be creative in supporting caregivers.
A maximum of 20% of your allocation can be used for Supplemental Services

22. PROGRAM RESTRICTIONS

23. Three Main Program Restrictions
No more than 20% of total expenditures on Supplemental Services
No more than 10% of total expenditures on Grandparents and Relative Caregivers for children 18 and under
A caregiver cannot receive more than 112 hours of respite care

24. ELIGIBILITY REQUIREMENTS
Who can receive funds

25. Eligibility Requirements
There must be a primary caregiver
Person being cared for must be “frail” – need assistance with 2 ADL’s or IADL’s
Person being cared for must be age 60+ or have dementia
*There is no financial eligibility criteria
For example, you can’t purchase adaptive equipment for someone unless they have a caregiver.
For example, you can’t pay for an older person’s lawn to be mowed just because it would be nice. There must be a frail older adult involved.
Per policy, priority should be given to
Older caregivers
Caregivers of people with dementia
Caregivers with the greatest social and economic need

26. Required Paperwork
The necessary evil

27. Paperwork Paperwork is required for: Respite care
Supplemental services
Counseling/training
There are no forms required when providing “Information to Caregivers about Available Services” or “Assistance to Caregivers in Accessing Services.”

28. Needs Assessment Complete for all receiving NFCSP services
Include all areas in your discussion with the family
ADLs/IADLs
Nutrition
Sleep Habits
Health Status
Don’t have to ask each question, but each section needs to be addressed
Social Health
Friends/Family Support
Crisis Prevention
Education

29. Caregiver Registration Form
Must be completed for Respite, Supplemental Services, Supports Groups, Training, Case Management and Counseling
Respite and Supplemental Services – collect receipts/invoices
Support Groups and Trainings - must keep attendance log
Formerly called Caregiver Intake Form
Gathers required data for reporting
Ask the attendee if they would complete the form at the first class/session.
If they have already received other NFCSP services they have probably already filled out this form!
Use a sign in sheet to keep track of the number of support group sessions or classes they attend.
Case Management and Counseling – track number of contacts/sessions

30. Care Recipient Assessment Form
Must be completed for Respite and Supplemental Services
Assesses care recipient for being frail
Gathers required data for reporting
Always collect receipts/invoices
Formerly called Care Recipient Intake Form
Gathers required data for reporting

31. Program Evaluation Use for all caregivers receiving services
Complete before services begin
Re-evaluate after one year or when they no longer are utilizing services

32. DATA COLLECTION
SAMS requirements

33. Data Collection and SAMS
Data must be collected and reported on all activities funded with NFCSP
Data is entered into the Social Assistance Management System (SAMS)
Data reported into SAMS must match fiscal reports
Used to generate reports for the federal government
Shows what services were provided and how many people were served
This data is increasingly important for advocacy efforts
If you are not the person who reports into SAMS it is still important that you are collecting all of the needed information to give to your data entry person.
Recording information in SAMS is the way to show that you are indeed providing the minimum service requirements to the caregivers in your county.
Data collection is required for all five services.

34. SAMS Data Collection Tools
SAMS Reference Sheet - explains how and where to report services for all five service requirements.
NFCSP Data Collection Sheet - optional tool to collect data for Information Services (Public Information).
SAMS Service Definitions – gives detailed description of all SAMS categories
**Forms can be found on the GWAAR Website
These are all optional tools

35. Data Collection for Respite
Complete Caregiver Registration and Care Recipient Assessment forms
Must indicate what type of respite
#66a Respite Care - In Home
#66b Respite Care – Facility Based Day
#66c Respite Care – Facility Based Overnight
Must choose a subservice
Report number of hours in 15 minute increments
Keep receipts/invoices
Required – number of hours of respite – need to keep track of how many hours each caregiver receives in order to satisfy the limit of 112 hours/caregiver
The number of hours reported in SAMS should match the NFCSP funds expended on the Fiscal Report.
Keep receipts/invoices indicating type and cost of service, name of service provider, date, the caregiver and care recipient name for program records.

36. Data Collection for Supplemental Services
Complete Caregiver Registration and Care Recipient Assessment forms
Report under #67 Supplemental Services
Subservice is not required
Anything that “complements the care provided” by the caregiver
transportation, supplies, adaptive equipment, etc.
Record the number of occurrences each month
Keep receipts/invoices
Sort of the catch-all.
If it isn’t giving the caregiver direct respite, it is probably a supplemental service
Lifeline – 1 occurrence each month
Adaptive equipment – 1 occurrence for each piece purchased
Attends – 1 occurrence for each month purchased, etc.

37. Data Collection for Caregiver Support Groups
#6503s Caregiver Support Groups
Support Groups
Caregiver Café’s
Attendees should complete the Caregiver Registration Form at the first meeting they attend
Use a sign in sheet at every meeting
Record the number of sessions attended each month
*Memory Café’s can be reported under Information Services as a Public Presentation

38. Data Collection for Caregiver Training
#6502s Caregiver Training
Powerful Tools for Caregivers
Small presentations or classes
Sending caregiver(s) to a conference
Complete the Caregiver Registration Form at the first meeting or class they attend
Use a sign in sheet at every meeting
Record the number of sessions attended each month
Report under each caregiver

39. Data Collection for Case Management
64-Caregiver Case Management
New category as of October, 2016
If coordinator salary is paid with NFCSP funds, this would be a good way to document some of the work
Complete Caregiver Registration Form
Record the number of contacts made – not actual time spent
Enter all caregivers that are enrolled in NFCSP

40. Data Collection for Caregiver Counseling
#6501s-Caregiver Counseling
Refers to actual counseling provided by a professionally trained person
Complete Caregiver Registration Form
Record the number of contacts made,
not actual time spent

41. Data Collection for Information to Caregivers
Report under #68 Information Services (Public Information)
Presentations, vendor fairs, mailings, articles, ads, etc.
No intake forms needed
Use NFCSP Data Collection sheet to keep track of the number of occurrences AND the number of consumers reached
The number of occurrences will be smaller than the number of consumers reached (1 health fair = 350 people reached)

42. Caregiver Coalitions
NFCSP policy requires each Aging Unit to be a member of a coalition with other agencies who work with family caregivers
Can utilize an existing coalition with similar membership
Aging Unit representative needs to attend meetings
Caregiver issues must be discussed
Ideally work on a project that benefits caregivers
Caregiver Coalition page on GWAAR Website

43. Questions? Contact Jane Mahoney or Lynn Gall any time with questions:
Jane –
Lynn -