SUPPORTING NORMALCY:A UNIQUE PROGRAM

FOR FAMILIES WITH YOUNG CHILDREN

Wendy Barnes, MSW, LSWJennifer Klapper, RN, MSN, CNS-

BCJennifer LaRegina, RN

“I WANT TO BE A FAIRY GODMOTHER”

Donor Background

$30,000 Commitment over 5 years

Employer Match

BRAINSTORMING IDEAS Family Fun Days

Poor history of attendance

Distance to travel

Families are BUSY

Events with ALS as the focus are scary

Individual Grants to Children

Supporting normalcy within their own neighborhood

ESTABLISHMENT OF THE ASHLEY FUND

Creation of Committee

Representation from all clinics/service areas

Define Purpose

“To provide children with the opportunity to participate in activities or programs not otherwise possible due to financial struggles”

Create positive family memories

ESTABLISHMENT OF THE ASHLEY FUND (CON’T)

Define Eligibility

Children ages 18 and under, living with a parent or legal guardian

Registered with the chapter and in our service area

Create the Process

PS Staff member assigned to follow up on request

KEY ELEMENTS IN A SUCCESSFUL CHILD FOCUSED PROGRAM

Identifying appropriate families

Not publicly advertised

Referrals from staff only

No formal means testing

KEY ELEMENTS IN A SUCCESSFUL CHILD FOCUSED PROGRAM

Application Process

Simple/one page

Each child in family eligible for grant

Can families cost share?

Repeat applications on a case by case basis

Ashley Fund Application Date: _________________

Name of Parent/Legal Guardian with ALS: ________________________________ __________

Address: ________________________________ __________ County: __________________

Home Phone: _______________________ Cell Phone: ________________________________ _

Email: _____________________________________________

Name of Alternate Contact Person: ________________________________ _______________

Home Phone: _______________________ Cell Phone: ________________________________ _

Email: _____________________________________________

Name and age of Child/Children applying: ________________________________ __________

1) What activity/ program are you requesting that requires financial assistance? _______________

________________________________ ________________________________ _________

2) Was your child participating in this activity/ program prior to the ALS in your f amily? YES NO

3) What other activities is this child currently involved in? _______________________________

________________________________ ________________________________ _________

4) What is the approximate cost of this activity or program? Please be specific, such as approximate cost per lesson, session, etc. I f the need is f or health or medical services, such as counseling, please include the cost of any co-pays you would be responsible f or. ______________________

5) I f this is a health/ medical need, what is your co-pay f or this service? _____________________

6) I s there a reason other than cost, why your child is not participating in the program/ activity?

YES NO I f YES, what is the reason? ________________________________ ______

7) How of ten would this activity/ program take place? ________________________________ ___ ________________________________ ________________________________ _________

8) Would you be able to provide any partial f unding toward this activity or program? YES NO

9) Would you be able to provide transportation to this activity or program? YES NO

RETURN FORM TO:

Evelyn Thoman The ALS Association Greater Philadelphia Chapter 321 Norristown Road, Suite 260 Ambler, PA 19002

or Fax: 215-664-4154

Please circle preferred method of communication

Please circle preferred method of communication

KEY ELEMENTS IN A SUCCESSFUL CHILD FOCUSED PROGRAM

Approval Process

Requests go back to committee for discussion and approval

Help families recognize realistic requests

KEY ELEMENTS IN A SUCCESSFUL CHILD FOCUSED PROGRAM

Funding Process

$350 average grant

Payment goes directly to vendor

Scholarships/vendor cost reductions

Wish Granting Organizations

POTENTIAL OPPORTUNITIES FOR FUTURE FUNDING

Donors requesting funds specifically to children

Dad Fund – easier sell/parents feel it’s a justified request

It supports our mission:

“….empowering people with Lou Gehrig’s Disease and their families to

live fuller lives by providing them with compassionate care and support.”

GRANTED REQUESTS

Counseling Co-pays

Karate

Gymnastics

Piano/Music Lessons

Sports

Class Trip

Senior Pictures

iPads

Tent

Water Park

Football Game

Family Portraits

Shopping Spree

Prom Tickets

Eli – CampDillon –

CounselingPhoebe – Preschool

Laila – Ballet Lessons

Horseback Riding Lessons

Adaptive Bicycle

FAMILIES SERVED/KIDS HELPED

April - Dec

2012 (8 mo)

2013 (12 mo)

Jan - August 2014 (7 mo)

Overall Total

helped with fund

0

10

20

30

40

50

60

70

80

90

100

Number of Families applied

Number of kids helped

FUNDS UTILIZED

April

-Dec

201

220

13

Jan-

Augu

st 2

014

Tota

l Apr

il 20

12 to

Aug

201

4$0

$5,000

$10,000

$15,000

$20,000

$25,000

Gift CardsGrants

OBSTACLES AND METHODS TO OVERCOME

Objective: The learner will be able

to discuss various obstacles, and

methods utilized to overcome these

obstacles while establishing and

running this family based program.

OBSTACLES Identifying candidates

Families struggle to ask for financial help

Families not knowing what activity to ask for help with

Identified candidates not completing the application process

IDENTIFYING CANDIDATES NOT Publicly advertised!

By the choice of the committee

Avoid abundance of applicants who may not be appropriate for the program.

NO Formal Means testing

Question on application if cost is the ONLY reason the child is not participating in the activity

And if family could do a cost share/copay if the Ashley Fund cannot completely fund the activity

IDENTIFYING CANDIDATES

Candidates have been hand selected with Clinical Staff input

Staff review of families on “Children’s list”

Ongoing updates to clinical staff on fund use

Ask clinical staff to discuss the fund with families during contacts

What we have tried:

FAMILIES STRUGGLE TO ASK FOR FINANCIAL HELP

Pride

Embarrassment

Feeling others are worse off

Feeling of failure to provide

Why?

FAMILIES STRUGGLE TO ASK FOR FINANCIAL HELP

Copay/cost share option

Allows families ownership in activity

Takes away connotation of being “given” a freebie

Empowers families by needing to find way to “make it happen” if the fund cannot offer full payment

What we have tried:

FAMILIES NOT KNOWING WHAT ACTIVITY TO ASK FOR HELP WITH FROM THE FUND

Mentally and physically exhausted

Overwhelmed with daily life

Lots of needs to meet

FAMILIES NOT KNOWING WHAT TO ASK THE ASHLEY FUND TO HELP WITH

Regular discussions with families on fund

How others have used fund

Intent of fund

Comments by other fund users on how it has helped them

Hope to help “normalize” activities they may be thinking of asking for or provide reassurance that it is ok to ask for help

What we have tried:

IDENTIFIED CANDIDATES NOT COMPLETING THE APPLICATION PROCESS

Not enough hours in day

Overwhelmed

Fear of failure to provide for family

IDENTIFIED CANDIDATES NOT COMPLETING THE APPLICATION PROCESS

VERY BASIC, one pager to not overwhelm families

Encouragement by clinical staff to complete

Simple ways of sending in application

What we have tried:

OTHER METHODS OF ADVERTISING THE FUND Flyers - intended to encourage families to

use fund

The clinical staff review the Children’s List and recommend potential candidates

Reminder of the fund being available

Description of fund and new application enclosed

Examples of how the fund has been used

Utilized fun themed envelopes and stationary without ALS logo

FLYERS Fund opening March/April 2012

July 2013 Flyer

55 families - Fun Flyer with examples of Ashley Fund activities

April 2014 Flyer

65 families

“Summer Camp Grant $350”

SUCCESS!!

Timing was key for this mailing

Over the following 6 weeks: 9 families/11 kids applied for camp grants

Matthew - fun times at camp!

Holiday Gift Cards• To meet the goal of the donor

- making difficult times a little brighter for the kids

• Include fund description and new application

• Again, timing is KEY

• Toys R Us, Target

HOLIDAY GIFT CARDS

20122013

Total

0

10

20

30

40

50

60

70

80

90

100

Number of Fami-liesNumber of Kids

OBJECTIVES

Financial and psychological benefits of the fund

Describe how funding a family support program facilitates family emotional tasks and goals in living with serious illness

Describe how a family funding program impacts Patient Services staff

FINANCIAL BENEFITS Common financial stressors on ALS

families

Loss of job and income

Medical and DME expenses

Need for custodial home health care

Change in living situation/move

Family members making job changes to help with home care

“Extras” for the children (music lessons, class trips) often no longer feasible

PSYCHOLOGICAL BENEFITS OF THE ASHLEY FUND

For the Children:

Normative, age-appropriate activities improve resilience

(Resilience= processes by which a person rebounds from adversity strengthened and more resourceful)

WHAT FACTORS ARE NECESSARY FOR RESILIENCE?

Support network

Self-esteem/confidence

Communication skills (including creativity)

Ability to manage strong feelings and impulses

ASHLEY FUNDS MAY HELP THE CHILD BY:

Developing multi-dimensional peer groups

Developing avenues of personal expression

Discovering/reinforcing the child’s talents

Reassuring anchors: “havens” of normalcy

PSYCHOLOGICAL BENEFITS

For the Parents:

Supports their efforts to maintain sense of family normalcy

Family well-being as a whole acknowledged (“joining” in a shared goal)

“Positive, empathic connection is a key intervention boosting mental and emotional health” (Norcross, Hogan and Koocher, 2008)

How does Ashley Fund support

family goals in living with ALS?

What are necessary family

“goals and tasks”

in living well with illness?

ROLLAND’S (1994) MODEL OF FAMILY GOALS IN ILLNESS

1) Grieve the loss of pre-illness life

Process grief, a little at a time

Intervention: Use language like: “making a place for the illness and managing it in your life; living alongside the illness; putting illness in its place” (Wright, Watson and Bell, 1996)

*The key is active management*

GOALS

2) Create a meaning for the illness

Expected roles and behavior (multi-generational and cultural)

Possible stigma of disability

Unknown cause/cure

Maximize a sense of mastery/competence

GOALSInterventions:

Discuss family illness experience/codes and expectations for how to cope (eg. Never ask for help? Being a daughter = full-time caregiver?)

Explore societal expectations (Marlboro Man?)

Identify most important elements of a “new normal” with ALS

GOALS

3) Gradually accept the illness as long term, while maintaining a sense of continuity between the past and future

Intervention:

Ask: What changes? What stays the same?

Tangibles (going to school, a holiday tradition, family members available)

Intangibles (family understandings, communication, values)

GOALS4) Pull together to cope with the immediate crisis

Ask: What can we as a family and as individuals do to support each other?

How can we stay connected to each other (how did we do that before, and how can we adapt that now)?

GOALS

5) Develop flexibility in the face of uncertainty

What new ways can we meet family needs?(e.g. car pools, help from a neighbor, Ashley Fund)

FAMILY SUPPORT

Gradual process of adaptation

Small interventions over time (like

the Ashley Fund) for momentum in

family’s process of accommodation

ASHLEY FUND IMPACT ON STAFF

Potential to lessen risk of Compassion

Fatigue

Compassion Fatigue = “Frustration

with the inability to change the course

of a painful trajectory.” (Boyle, 2011)

Most of our interventions focus on

coping with illness progression,

challenges, adaptations

Ashley Fund work very different: focuses

on positive interventions

Restorative to staff

ASHLEY FUND IMPACT

“…Just knowing you’re in my

corner.”

Ashley Funds are powerful,

symbolic: the family, not just the

individual PALS, has an ally in their

positive goals.

From a family member:

“…every time I panic or worry,

angels swoop down and lift us up

(even should we not get funds,

just knowing you are all in our

corner sure does help!)” 

Family Photo Session