The Need in our CF Community
When Amanda’s son, Jonathan, was diagnosed with Cystic Fibrosis, she knew their lives would never be the same. But the strain on her professional life, and subsequently, her family’s finances, has been far greater than she anticipated. Jonathan is now 13 years old, and Amanda has lost count of the number of times she has lost a job because she missed work while Jonathan was hospitalized. She is not able to hold a position long enough to qualify for FMLA, leaving her trapped in a cycle of getting and losing work. “I can no longer keep this depressing cycle of loss going,” she says, “I want a way to sustain myself and my family during trying times.”
Amanda’s experience is not unique. Parents of children who have chronic illnesses experience chronic grief, significant stress, and suffer adverse effects in their working lives. Those with low incomes experience an even greater burden in caring for their children.
Not only do caregivers need employment support, but with the many medical advancements of late, life expectancy and lung function for those with Cystic Fibrosis continue to improve. These medical advancements will have a significant, positive impact on the CF community, but will also come with new challenges. As a result of their improved health, many CF patients will lose SSDI income and will need to find a way to support themselves financially. In 2018, only 39% of adults with CF had a college degree, and just 52% were employed. While many patients will see improved health, they will face a reality that they were not anticipating and are not prepared for: providing for themselves financially.
CF caregivers and adult patients both need flexible, mobile jobs that allow them to continue working while dealing with the intense regimen of CF care. To meet this need, Claire’s Place Foundation has created the Work Proudly program.
Claire Wineland inspired our program and did not allow CF to keep her from living a full life. As an activist, speaker, philanthropist, and author, she encouraged others to “Live a life you are proud of.” Claire personally experienced how difficult it was as a young adult with CF to find flexible employment that would provide her with a realistic, sustainable income. As Claire’s Place continues her legacy, we are committed to helping CF patients and caregivers “Work Proudly.”
Together, we can help our CF community to live, and work, proudly.
Claire’s Place Foundation will pilot the Work Proudly program from July 2020 to June 2021, serving individuals with CF or caregivers of children with CF. Work Proudly will help participants identify potential careers, cover the cost of certificate job training, and provide them with tools and equipment for remote work. This will allow participants to gain the skills to be competitive in the job market and acquire flexible, work-from-home or hospital employment.
Participants will be recruited through a Social Worker Referral, the link is below. The Work Proudly Case Manager will contact all referred individuals to screen them to ensure they meet Work Proudly’s qualifications, which include:
- A confirmed diagnosis by a hospital professional of Cystic Fibrosis for themselves or their dependent.
- A history of inability to support themselves through other avenues and/or SSI/SSDI that is at risk of being cut back or is not enough to support themselves or their family.
Participants will be required to sign a commitment letter, stating that they will agree to:
- Complete all training we provide
- Ensure that all equipment is kept in good order and utilized for the intended purpose
- Answer all surveys promptly and submit a video testimonial at the completion of the program
After being accepted and enrolled, Claire’s Place will provide Work Proudly participants with the following:
- Intake Interview – The participant and the case manager will meet over the phone or through video conference. The case manager will gather information on the participant’s work history, education, current health status, and interests in order to find possible positions that are appropriate for them as an individual. Together, they will develop a career and education plan, outlining the skills the participant will need to meet their career goals.
- Tuition Assistance – Claire’s Place Foundation will connect participants with training resources and will cover the full cost of certificate training or classes for participants. Any certificate or skills training that will provide the participant with marketable skills and allow them greater job flexibility will qualify, including medical transcription, graphic design, customer service, data entry, interpretation/translation, accounting, bookkeeping, and more. Training will be started within 30 days of acceptance into our program and completed within 6-months when possible. Through the help of program volunteers and interns, participants will be connected with training in their community, or virtually through several online school services.
- Tools and Equipment –For those who are struggling financially, even the cost of the tools and equipment they need to work from home can be a barrier to a lucrative career. Claire’s Place will provide participants with computers, transcription machines, headsets, and software to support participants in their training and new jobs if needed. We hope to partner with Human-I-T.org. in providing refurbished computers to individuals that require them.
- Ongoing Support – Our case manager and Executive Director will work closely with the participants in the first month and up to job placement. Participants will then meet with the case manager virtually at 30 days, 60 days, and one year from being accepted into our program.
- Graduation – Upon completion of their career training or classes, Claire’s Place will provide participants with certificates of completion, stating that participants are certified to “work proudly.”