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Resources & Support for Families Coping with Chronic Illness

Explore the role of social workers in providing emotional support, resources, and advocacy for families dealing with chronic illnesses. Find community centers, psychosocial support, insurance programs & scholarships for financial aid.

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Resources & Support for Families Coping with Chronic Illness

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  1. SOCIAL WORKER R&R MY ROLE AND YOUR RESOURCES Lindsey Martins, MSW

  2. Role of Medical Social Worker • Work closely with families while in the hospital and out, to provide education, assistance with resources and emotional support. • Can help families identify needs and help them gain access to outside resources for both emotional and practical needs. • Assist family with navigating the hospital system

  3. Role of CF Social Worker • CF Social Worker can serve as a liaison between the patient, family, and medical team • Assist patients and families with learning how to cope with maintaining a “normal life” while struggling with a child who has a chronic illness • Help identify resources specific to CF

  4. Psychosocial Support for Parents A social worker can help with……… • Be an effective advocate for your child • Career and financial issues • Relationships within the family system • Coping skills and styles

  5. Support For Parents Cont… • New diagnosis • Identify risk factors for patient non-adherence • Importance of an adequate support system • Quality family dynamics • Temperament of the child/adolescent

  6. Potential Psychosocial Concerns • Feeling different from his/her peers • Feeling alone and unsupported • Lack of motivation • Nonadherence with treatments

  7. Community Center For Health & Wellness • The Community Center for Health & Wellness (CCHW) is a non-profit professional counseling center and training institute offering quality services at an affordable sliding scale fee. The CCHW offers a wide variety of services by combining contemporary psychotherapy with values that honor the mind, body, & spirit. The CCHW offers holistic programs for marriage and family therapy, health counseling, and the treatment of trauma. • http://www.itp.edu/resources/cchw/index.php

  8. Psychosocial Concerns Cont…. • Traumatic experiences with treatments and procedures • Falling behind with schoolwork • Missing out on everyday activities, events, vacations because of illness • Depression & adjustment to illness

  9. Newborn Diagnoses • Supporting parents through new diagnosis • Connecting parents with other parents • Providing links to resources • Offering ways to organize information • Remaining available throughout process for support and resources

  10. Support in the Hospital • Parent mentor • Social worker • Child Life • School • Chaplaincy • Child Psychiatry • CF Education • Patient Relations

  11. Support Outside The Hospital • Parents mentoring parents • Connections through email • Support groups – in person and online • Counseling and psychiatric services for both families and patients

  12. Insurance • California Children’s Services • http://www.dhcs.ca.gov/services/ccs/Pages/default.aspx • CCS is a state program that helps children with certain diseases, physical limitations or chronic health problems. • Family income of $40,000 or less out-of-pocket medical expenses expected to be more than 20 percent of family's adjusted gross income.

  13. GHPP • GHPP Genetically Handicapped Persons Program • http://www.dhcs.ca.gov/services/ghpp/Pages/default.aspx Who is this program for? 
 GHPP is a state‐funded program that can help individuals with genetic diseases pay for 
medical costs, including equipment and medication. 
 What are the eligibility requirements? • The program is open to California residents 21 years of age or older. Persons under 21 may be eligible for California Children’s Services (CCS). If a specific condition is not covered under 
CCS, an individual under 21 can apply to GHPP.

  14. Financial Support The Living Breath Foundation http://www.thelivingbreathfoundation.com/ • This foundation supports research, medical assistance, scholarships, financial aid Change of Life Foundation http://www.changealife.org • The ultimate mission of the founder is to inspire and challenge grant recipients to follow his charitable example, and one day repay the favor by helping others in need. • Grants are available for a variety of categories

  15. College Scholarships • The Cystic Fibrosis Scholarship www.cfscholarship.org For students with CF enrolling in an undergraduate college program or a vocational school • SolvayCARES Scholarship www.solvaycaresscholarship.com. Awards are based on applicants’ creativity, academic excellence, community involvement and ability to serve as a positive role model for the CF community.  • Elizabeth Nash Foundation www.elizabethnashfoundation.org Scholarships for CF patients that can help them to resume undergraduate and graduate degrees • Boomer Esiason Foundation Scholarship Program http://www.cfscholarships.com/BEFScholarships/index.htm Scholarships for both undergraduate and graduate degrees

  16. Social Work Goals 2010 • CF Mentoring program • Focusing on patients schooling and connection between patients • Spending more time with patients in the hospital • Learning the insurance process

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