Spring 2002 ~ Newsletter

Hope: While Having Cystic Fibrosis

Newsletter Navigation:

Quick Navigation:

If I Need Help, What Is Available To Me?

by Staci Thrasher

At the time of diagnosis, many families have expressed feeling like they are the only people in the world with a child with CF. Know one thing for sure – if your child was recently diagnosed with CF – you are not alone!  There are many families who know what you are going through and there are many services and resources available to help you and your family come with this diagnosis.  Also know that this is an exciting time in the CF community regarding progress in research as well as improvements in resources and services available to people with CF. The desire is that this article will provide you with practical information about services available to your and your child as well as to provide you with hope regarding your child’s future. 

Support Services specific to the Alabama CF Center:

• CFHeart2Heart newsletter – this is a quarterly newsletter by and for the CF community in Alabama.  Each newsletter addresses a different topic relevant to families living with CF

• Weekly inpatient parent support group – this group is held every Wednesday in the 5 Tower Conference Room at Children’s Hospital.

• Quarterly outpatient parent discussion groups – This meeting is held the 3^rd Saturday of every 3^rd month.  The next meeting is scheduled for April 20^th, 2002.

• CF Support Network – A network initiated by a parent and currently being developed.  This network will allow families to support one another at the time of diagnosis and while in the hospital via cards, telephone calls, and hospital visits.

• Children’s Harbor / Family Center – Children’s Harbor provides a variety of support services to families living with CF with emphasis on professional counseling for the whole family.  They also have a variety of activities available for patients while they are in the hospital.

• The CF Team (doctors, nurses, nutritionists, nurse practioners, social workers, respiratory therapists, chaplains, and child life specialists) - Your team is always available to help you address issues as they arise and they can help link you with other resources.

Other Resources available in Alabama:

• Children’s Rehabilitation Services (CRS) – CRS is a state agency that provides supportive and financial services to children with CF. Eligibility for CRS is based on diagnosis and all CF families qualify for their assistance.
• Vocational Rehabilitation – Provides job training and financial assistance for secondary education for people with disabilities.
• Local CF Foundation Chapter – Organizes fundraising opportunities for CF research.  For more information call 1-800-523-2357.
• CF Hope for Alabama – An organization to help CF families during times of crisis (medications, utilities, etc.)
• Individual and Family Support Council – A state program that provides assistance to individuals with disabilities.

 National CF Resources:

• CF Foundation – Provides accreditation for CF centers, education and funding for research.  (http://www.cff.org)
• CF Pharmacy – A mail order pharmacy specializing in CF medications.
• Pharmaceutical Assistance Programs – If you do not have insurance or a prescription plan, most companies have programs to help you get your medications.
• Supplemental Security Income (SSI) – Disability for children though the Social Security Administration.  Contact your local social security office for more information. 

 Legislative Progress:

• Health Insurance Portability and Accountability Act (HIPAA) of 1996 – Protects families from being denied insurance through a group employer because of a pre-existing condition.  Also ensures that you can change insurance plans with a job change if there is no more than a 62-day lapse in coverage.

• Family and Medical Leave Act of 1993 – Permits employees to take leave to care for a family member with an illness and the employer must continue to provide benefits during the leave .

• Ticket to Work and Work Incentives Improvement Act of 1999 – This is not in effect in Alabama as of yet, but will eventually allow people with disabilities to work and keep Medicare for up to 10 years and will allow them to buy Medicaid coverage.

As you can see, there are many resources available to you and your family.  You are not alone in your battle with CF. Be encouraged and take advantage of the resources available to you.

Site Map

Contact Us

Important Information