Arthritis Foundation

“MECCA” Program Plan

Mentoring, Empowering, Communicating, Connecting, and Advocating

By Allie Avishai

Stojanna Hollis

Valerie Smith

 

 

Agency Description

The Arthritis Foundation's mission is to improve lives through leadership in the

prevention, control and cure of arthritis and related diseases. More than 1 in 5 adults and as

many as 300,000 children in the United States suffer from some form of arthritis (Center for

Disease Control and Prevention, 2007). One of the Arthritis Foundation's national priorities is

to ensure that all people with arthritis have access to the knowledge, skills and resources they

need to be proactive in improving their health and quality of life. For children and families

living with Juvenile Arthritis, this means providing quality, developmentally appropriate

education, programs and services.

The Arthritis Foundation believes in family-centered care. Family-centered care is an

approach to the planning, delivery, and evaluation of health care whose cornerstone is active

participation between families and professionals. Family-centered care also recognizes that

families are the ultimate decision makers for their children, with children gradually taking on

more and more of this decision-making themselves as they get older. When care is family-

centered, services not only meet the physical, emotional, developmental, and social needs of

children, but also support the family’s relationship with the child’s health care providers and

recognize the family’s customs and values.

The Mentoring, Empowering Communicating, Connecting, and Advocating (MECCA)

Program is a non-profit program based on the goals of the national Arthritis Foundation and

designed to provide additional support to youth with Juvenile Arthritis (JA) and their families.

MECCA, like its namesake, is intended to be a place where families can gather to share and

receive information, stories, words of encouragement and support, and educational materials.

 

 

The MECCA program aims to provide every child who has been diagnosed with JA and

their families with consistent and regular access to a trained mentor who can provide informed

guidance and emotional support. Whenever possible, the program strives to match families

with mentors who live nearby and who would be available to meet with youth and their families

in person. This mentor will also have the trained knowledge and capability to partner with the

Arthritis Foundation to conduct social activities and educational opportunities such as

conferences, symposiums, and educational events. However, considering that individual and

face-to-face interactions may not always be possible, the MECCA program will maintain a

database of volunteers who can regularly speak with families over the phone, via email or

Skype. In addition, the MECCA program will develop and maintain social media outlets which

will facilitate communication and networking between individuals and families affected by

Juvenile Arthritis.

 

 

Needs Assessment

Juvenile arthritis (JA) refers to any form of arthritis-related condition that develops

in children who are less than 18 years of age. The impact of arthritis on a child’s school and

social life, family relationships, sports, and almost every other aspect of daily life can be

devastating and can cause feelings of isolation and despair. The debilitating effects and the pain

of juvenile arthritis prevent children from enjoying the recreational activities of childhood,

while medical and therapeutic costs take an additional toll on the families’ abilities to

participate in activities that facilitate physical, psychological, social and emotional development

of youth (Schanberg et. al., 2003).

One of the Arthritis Foundation's national priorities is to ensure that all people with

arthritis have access to the knowledge, skills and resources they need to be proactive in

improving their health and quality of life. For children and families living with Juvenile

Arthritis, this means providing quality, developmentally appropriate education,

programs and services – such as brochures, books, newsletters, online tools and

information, educational events, conferences, camps, workshops and family days.

Juvenile arthritis (JA) refers to any form of arthritis-related condition that develops in children

who are less than 18 years of age.

The Arthritis Foundation Juvenile Arthritis programs are designed to help children

with JA and their families overcome obstacles, prepare for the future, and build friendships.

There is pain, loneliness and depression that come with Juvenile Arthritis because most

children have never met another child with JA. This is replaced with hope once the child gains a

better understanding of JA and develops the peer support with other kids going through similar

 

 

challenges and can share new techniques for managing juvenile arthritis. According to the

Arthritis Foundation, one of the best ways for children to combat isolation is to meet other

children with arthritis. When he/she does, her perception that she’s the “only kid in the world”

can melt away. Utilizing the Arthritis Foundation MECCA program, kids AND parents will be

able to relate to each other’s experiences and won’t feel that they have to hide or downplay the

fact that they have a chronic disease (Huff, 2012).

Arthritis not only affects individual with the disease, but their entire family as well.

Parents experience many emotions – from sadness to guilt to anger that their child has

arthritis. It’s tempting to keep a low profile and avoid participating in too many activities when

their child is first diagnosed. This is where the MECCA Mentoring Program comes in. Research

states that parents’ having an outlet for networking opportunities with other families facing

their same issues is “essential” for the family unit to respond to challenging circumstances and

manage them effectively (Bradshaw and Garbarino, 2004, p. 185).

The evidence of the impact of patient education and psychosocial support remains

limited, but most literature agrees that while it is important to appropriately manage the medical

aspects of arthritis in children, it is equally important to provide psychosocial interventions

(Wallace, 2006):

• patient/family education

• psychosocial interventions/support services

• community resources

• school based resources

• information and referral regarding insurance coverage and benefit coordination

 

 

Education and behavioral interventions are important with specific interventions. For example,

there is strong evidence that a behavioral intervention involving group education sessions can

have a positive impact on increasing dietary calcium intake.

Munro and Murray (2006) include education and support among the important

aspects of effective JA treatment. Hashkes and Laxer (2005) agree that the treatment of JA

combines anti-inflammatory and immunomodulatory medications with physical and

occupational therapy, an occasional need for surgery, nutritional support, and psychosocial

and educational partnership with patients and parents.

The Arthritis Foundation MECCA Program complements the treatment that the

children receive by their healthcare provider. This program provides a forum for children and

their families to better understand their diagnosis, learn self-management skills and build a life-

long network of peer support. The Arthritis Foundation MECCA Program is changing lives for the

better.

 

 

Logic Model

 

 

Target Audience

The target audience for the MECCA program is all youth in the United States who have been

diagnosed with Juvenile Arthritis (or related diseases) and their families. Ideal candidates for

mentors in the MECCA program include (but are not limited to)

• Young adults and parents/adults who have been diagnosed with arthritis or

related diseases

• Parents of children who have been diagnosed with arthritis or related diseases

• Young adults and parents/adults who have been trained and have hands-on

experience with working youth with arthritis, including physical therapists,

counselors, and medical personnel

Proponents of relationship theories espouse the benefits of developing mentor

relationships, citing that they are “essential to human development” (Larson and Walker, 2005,

p. 94) and have a number of positive outcomes including greater self-confidence, motivation,

sense of autonomy, self-efficacy, resiliency, and social capital (Eccles and Gootman, 2002;

Larson and Walker, 2005; Brennan 2008). An effective means of putting relationship theories -

-which focus on creating secure, long-term relationships with caring and committed adults--

into practice is to develop interactive communities around common interests. Eccles and

Gootman (2002) note that “synergy in the different settings of adolescents’ lives and among the

adults who oversee these settings” (p. 110) is an important factor in increasing the likelihood of

positive outcomes for youth. Additionally, they go on to note the importance of health-related

messages being shared through a variety of settings and modalities, stating that health

information received in this way “[has] greater effect than those delivered by only one source”

 

 

(p. 111). Therefore by providing multiple avenues for youth with JA and their families to receive

information and support related to the youth’s health issues, participants in the MECCA

program should be more likely to adopt healthy practices based on their individual needs.

Brennan (2008) goes on to add that “through this interactive process, an entity can emerge that

is far greater than the sum of its parts” (p. 59).

 

 

Marketing Plan

Target Audience: As previously explained, the target audience is children with juvenile

arthritis and their families. Particularly targeting parents of newly diagnosed children to serve as

mentees, and “veteran” parents (those whose child has been diagnosed for two or more years and

has attended at least one Arthritis Foundation Event) to serve as mentors. The Arthritis

Foundation is also targeting “young adults” ages 18-35 with some form of arthritis to serve as

mentors in training specifically geared to the teenage JA population.

Unique Selling Proposition: This program is unique and one-of-a-kind. The Arthritis

Foundation serves as the leading resource for patients with arthritis. While there are several

online communities for parents of children with JA to turn to, the Arthritis Foundation would

also be providing access to medical professionals, brochures, books, resources for teachers,

comfort aids for the children, and in-person networking opportunities with potential for

scholarships.

Pricing: This program is 100% volunteer run and led and will be offered at no-cost to

families participating. Grants and special event fundraisers will help pay for PowerPack

distribution (resources) and assist in costs associated with in-person events. Lead

mentors/volunteers will be asked to donate their time, cell phone usage, and additional needs as

requested.

Positioning: The Arthritis Foundation MECCA Program will serve as the premier

mentorship and resource program for newly diagnosed children and their parents and new

families to the Arthritis Foundation.

 

 

Distribution: The MECCA Program will be able to gain traction through:

• The Arthritis Foundation Websites: www.arthritis.org and

www.kidsgetarthritistoo.org

• Pediatric Rheumatology Clinics and Offices

• Local Children’s Hospitals

• Pediatrician’s Offices

• Physical Therapy Offices

• School Nurses and School Nurse Associations

• Local Arthritis Foundation events: Jingle Bell Walk/Run, Walk to Cure

Arthritis, Gala Events, Camps, National JA Conference, Local JA Symposiums,

Etc.

Marketing Materials:

• Postcards

• Brochures

• Flyers/Posters

• Website

• Folders (to hold information to be distributed to newly diagnosed)

• Parent Video and written Testimonials (Website Only)

• Hot/Cold Teddy Bears with PowerPack/AF/MECCA Logos on them

 

 

Promotions:

• Physician Mailings: ask doctors to do a mailing or email their patients

regarding the new program.

• Place information in “Doc Boxes” in pediatric medical professional offices

• Include link to sign up on Walk to Cure Arthritis and Jingle Bell Walk/Run

Kintera Blast Emails.

• Include information on all Camp Paperwork.

• Have a special MECCA booth at local events and the National Juvenile

Arthritis Conference.

• Provide Postcards and sign up information to school nurses and attend annual

state school nursing association conferences.

 

 

SWOT Analysis:

 

 

Budget

Two budgets are presented. The National Organization will need to provide/secure funding for

PowerPack Materials, and mailing and distribution. Regional offices will need funding for

volunteer travel expenses, staff travel, marketing/print materials, additional PowerPack

materials, and supplies.

National: Local/Regional:

Proposed Proposed Account name Budget Account name Budget Sponsorship - Personal Major Gifts >10,000 0 Sponsorship - Personal Major Gifts >10,000 0 Sponsorship - Personal Annual Gifts <10,000 0 Sponsorship - Personal Annual Gifts <10,000 0 Sponsorship - Corporate 0 Sponsorship - Corporate 0 Sponsorship - Foundation Gifts 0 Sponsorship - Foundation Gifts 0 Sponsorship - Clubs/Organizations 0 Sponsorship - Clubs/Organizations 0

Total Sponsorship - Shareable: 0 Total Sponsorship - Shareable: 0 Sponsorship - Personal Major Gifts >10,000 0 Sponsorship - Personal Major Gifts >10,000 0 Sponsorship - Personal Annual Gifts <10,000 0 Sponsorship - Personal Annual Gifts <10,000 0 Sponsorship - Corporate 200,000 Sponsorship - Corporate 40,000 Sponsorship - Foundation Gifts 50,000 Sponsorship - Foundation Gifts 10,000 Sponsorship - Clubs/Organizations 0 Sponsorship - Clubs/Organizations 0

Total Sponsorship - Non-Shareable: 0 Total Sponsorship - Non-Shareable: 0 Bequests - shareable 0 Bequests - shareable 0 Bequests - non-shareable 0 Bequests - non-shareable 0 United Way 0 United Way 0 Federated Campaigns 0 Federated Campaigns 0 Government Grants - Federal 0 Government Grants - Federal 0 Government Grants - State 0 Government Grants - State 0 Government Grants - Local 0 Government Grants - Local 0 Sales 0 Sales 0 Service Fees 0 Service Fees 0 Net Assets Released from Restriction 0 Net Assets Released from Restriction 0 Net Assets Released from Restriction 0 Net Assets Released from Restriction 0

Total Income - All Sources: 250,000 Total Income - All Sources: 50,000

Specific Assistance 0 Specific Assistance 0 Salaries & Wages (Distribution Center) 50,000 Salaries & Wages 5,000

 

 

Payroll Taxes 0 Payroll Taxes 0 Employee Benefits 0 Employee Benefits 0 Data Processing 0 Data Processing 0 Professional Fees/Contracted Svcs 0 Professional Fees/Contracted Svcs 0 Professional Fees - Audit Fees 0 Professional Fees - Audit Fees 0 Professional Fees - Legal services 0 Professional Fees - Legal services 0 Supplies (PowerPack) 150,000 Supplies (PowerPack Items) 15,000 Telephone 0 Telephone 0 Cellular Telephone 0 Cellular Telephone 0 Internet Service 0 Internet Service 0 Postage & Shipping 50,000 Postage & Shipping 2,500 Printing and Artwork 0 Printing and Artwork 1,000

Material Expense 0 Material Expense (Provided by AF National) 5,000

Equipment Lease and Rental 0 Equipment Lease and Rental 0 Equipment Maintenance 0 Equipment Maintenance 0 Depreciation 0 Depreciation 0 Staff Travel 0 Staff Travel 1,000 Volunteer Travel 0 Volunteer Travel 2,500 Meetings - Facilities and Meeting Space Rental 0

Meetings - Facilities and Meeting Space Rental 0

Meetings - Equipment rental 0 Meetings - Equipment rental 0 Meetings - Catering-food and beverage 0 Meetings - Catering-food and beverage 0 Meetings - Registration Fees 0 Meetings - Registration Fees 0 Miscellaneous 0 Miscellaneous 0 Bank Charges 0 Bank Charges 0 Recruiting/Moving 0 Recruiting/Moving 0 Dues and Subscriptions 0 Dues and Subscriptions 0 Staff Development 0 Staff Development 0 Organization Dues and Membership 0 Organization Dues and Membership 0 Advertising Expense 0 Advertising Expense 3,000 Insurance 0 Insurance 0 Taxes and Licenses 0 Taxes and Licenses 0 Technology Fees 0 Technology Fees 0

Total Operating Expenses: 0 Total Operating Expenses: 35,000 Chapter Share of Contribution 0 Chapter Share of Contribution 0

Total Share Expense: 0 Total Share Expense: 0 Total Expenses: 0 Total Expenses: 0

Net after Share: 0 Net after Share: 0

 

 

Resources (Arthritis.org, 2014)

JA Power Pack: A toolkit with useful information and tools to assist newly-diagnosed

children and teens, as well as their parents. These resources were designed to give families the

POWER to make living with JA easier. Knowing what to expect and how to deal with it is the key

to better living with JA. And our JA Power Pack will help get parents started. Now the power is in

their hands!

Young Adult Transitions Toolkit: Young people with rheumatic diseases have to take on

new responsibilities as they enter the world of adult medical care. The Arthritis Foundation

Transition Toolkit is designed to help youth and their families develop the skills they need to

successfully make the leap to independence. Young adults can take a brief health care skills

assessment and create a customized Transition Toolkit that meets THEIR needs. Or check out

the resource library to learn more about: Communicating with your doctors, organizing your

health care, going to college with arthritis, managing stress, eating well, and much more!

JA Family Events: JA Family Programs are fun-filled days for the whole family! Kids and

teens enjoy activities and games while parents participate in educational sessions facilitated by

pediatric rheumatologists and other health professionals. Educational sessions address topics

such as disease management techniques, updates in medication and treatment, parent support,

family dynamics, transition and school issues. JA Family Programs offer the opportunity to meet

other families who face similar challenges and to get your questions answered by a health

professional in a relaxed, non-clinical setting.

 

 

JA Camps: JA Camps exist to provide education, networking and fun for kids and teens

with arthritis, and in some cases, for the whole family! Campers take part in activities designed to

help them increase self-confidence, improve arthritis self-management, and develop leadership

and communication skills all while making new friends who share similar challenges. At our

family camps, parents/caregivers and siblings get to join in the fun too!

Advocacy: Juvenile arthritis is a major health concern, yet many people are unaware that

juvenile arthritis even exists. Kids with arthritis and their families each have a unique story to tell

that can raise awareness about JA and impact policy decisions on a local and national level. The

Arthritis Foundation can teach families how to use their voice to educate government officials,

school nurses, teachers, health professionals about arthritis and its unacceptable impact.

Informative Books, Brochures, etc.: Learn more about childhood rheumatic diseases,

arthritis management techniques, school issues and more through the Arthritis Foundation’s

print and online resources. Many of these items are free.

Website: The Arthritis Foundation hosts several websites including www.arthritis.org and

www.kidsgetarthritistoo.org . Each website provides helpful articles, testimonials and a virtual

community for parents to connect and learn more about the disease.

Diversity

The Arthritis Foundation sets core standards for diversity. Due to the nature of the disease

(it does not discriminate), neither does the Arthritis Foundation. “Culture can profoundly

influence the way people experience and respond to health and disease. With the changing

demographics throughout the US, the Arthritis Foundation (AF) is to strive to come one step

closer to lessening the burden of arthritis within diverse populations. In efforts to meet the AF’s

 

 

strategic goal to reduce arthritis related disparities in health and health care, the Arthritis

Foundation (AF) staff have worked together to create a compilation of AF and other resources to

aide AF staff and volunteers in their work with diverse populations.” (Diversity Handbook,

2014).

The Arthritis Foundation continues to partner with outside organizations to help bring

awareness to chronic diseases in diverse populations. The Foundation also works with these

entities to minimize health disparities through advocacy, education, and raising awareness.

According to a study by the Centers for Disease Control, arthritis impact is worse among

minorities. The study analyzed three years work of data and was able for the first time to publish

information regarding the disease’s prevalence for minority ethnic groups (Bolen, 2006).

 

 

Evaluation Plan A post survey and interviews will be taken to evaluate the participants’ feelings and

knowledge gained through the MECCA Program. In addition, it will measure self confidence,

motivation, and general changes to their attitude about their disease. The evaluation results

from each region will be compared, allowing the Arthritis Foundation to evaluate what skills

need to be added to the MECCA experience.

In addition, a survey and interviews will be conducted quarterly with MECCA Mentors and

Mentors in Training. Not only will these evaluations assess their satisfaction with their role, and

potential program changes, but also their success in volunteer job performance.

 

 

 

 

Sample Evaluation:

Please tell us about your experience with MECCA:

Yes Kind Of Not Really

Before MECCA, I didn’t know any other family that had a child with arthritis.

I am the only one in my neighborhood with a child with arthritis Through MECCA, I learned something new about arthritis. Through MECCA, I made new friends In MECCA, the AF staff cares about me. In MECCA, my mentor cares about me. In MECCA, the volunteers and staff listen to me. In MECCA, I could go talk to a staff member or volunteer mentor for advice if I have a serious problem

Through MECCA, I feel welcome and included In MECCA, I feel like people are happy to see/talk to me Through MECCA, I gained a better outlook on my child’s diagnosis Through MECCA, I am given the opportunity to attend JA Events Through MECCA, I learned about making positive life decisions for my child

I would like to become a MECCA Mentor myself Because of MECCA….

Yes Kind Of Not Really

I am able to serve as a leader to some of my peers I am better at making friends I am better at telling other about my thoughts and feelings I am better at listening to other people My family feels more confident about making healthy decisions I feel less stressed about my child’s diagnosis I want to help other parents dealing with similar issues I feel better about myself I Feel like I can make a difference I want to help others with arthritis or related diseases I am more aware of my child’s diagnosis and their disease I feel like I’m a part of a family I learned I could do things I didn’t think I could do before

 

 

Works Sited

1. Bradshaw, C. and Garbarino, J. (2004). Practices in youth development. Thousand

Oaks, CA: SAGE Publications, Inc.

2. Brennan, M. (2008). Conceptualizing resiliency: An interactional perspective for

community and youth development. Child Care in Practice, 14(1), 55-64

3. Centers for Disease Control and Prevention-CDC, December 2007 issue Arthritis Care

& Research

4. Eccles, J. and Gootman, J. (2002) Community programs to promote youth

development. National Research Council Institute of Medicine. Washington, DC:

National Academy Press

5. Larson, R. and Walker, K. (2005). Recreation and youth development. State College,

PA: Venture Publishing.

6. Schanberg L, Anthony K, Gil K, and Maurin E. (2003) Daily pain and symptoms in

children with polyarticular arthritis. Arthritis and Rheumatism, 48(5), 1390-97.

7. Huff, Charlotte. (2012) A Parent’s Guide to Raising a Child with Arthritis, Atlanta, GA:

Arthritis Foundation

8. Wallace C. (2006) Juvenile Idiopathic Arthritis: Critical Elements of care. Seattle, WA,

USA: The Centre for Children with Special Needs.

9. Munro J. (2006) Juvenile idiopathic arthritis guidelines (Provisional). Australian

Paediatric Rheumatology Group

10. Hashkes P, and Laxer R. (2005) Medical treatment of juvenile idiopathic arthritis.

JAMA

 

 

11. http://www.arthritis.org/public-health/diversity-resource-handbook/

12. Bolen J, Schieb L, Hootman JM, Helmick CG, Theis K, Murphy LB, and Langmaid G.

(2006) Differences in the prevalence and impact of arthritis among racial/ethnic

groups in the United States, National Health Interview Survey, 2002, 2003, and 2006.

Centers For Disease Control.