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TRANSITIONING TO ADULTHOOD

Maneuvering the maze of questions when your child is transitioning to adulthood can be a confusing time. It can also be an exciting experience for both the child and parents. Dealing with everything from medical care, insurance issues, continuing education and even “empty nest syndrome”, can become over whelming without proper planning. All the decisions that have to be made can seem daunting. We hope that these web pages will help you answer the questions you may have, will help you work through any problems you may encounter and will help you in making the normal transitions of life smooth ones.

LEAVING FOR COLLEGE

Going away to college can be an exciting time for an adolescent, but it can be a nervous time for the parent of a child with a chronic illness. The preparation for the move into adulthood should start when your son/daughter is in high school. Here is a list of things to do that will help make this step in your adolescent’s life a smooth one.

  • Your son/daughter should start participating in decisions concerning his/her medical care while still in high school. Talk to the doctors and nurses at he HTC with your child, and allow him/her to aid in the decision making process. Allow him/her to decide what care is best for them. Ask him/her what his /her needs are. Give them the opportunity to be proactive in healthcare decisions.
  • Whether your child will be staying at the same HTC or not, make sure that your HTC knows which college or university you will be attending. Make arrangements for your current HTC to send your medical records to the new HTC. If you are leaving the area, you should contact the HTC in the new area and introduce yourself.
  • When your son/daughter decide on the college or university he/she will attend, contact the Health Services Department. It is better if you can make this contact before you arrive. Suggest that the Health Services Department and the local hospital contact your home HTC.
  • If your son/daughter is on a self infusion schedule, this will influence where the factor and supplies are stored. If you don’t self infuse you will want to store factor and supplies at the Health Services Department. If you do self infuse you will need a refrigerator.
  • The decision as to whether and to whom you should disclose your bleeding disorder is an important one. This decision should be made after much thought and consideration. Choose wisely.
  • For those going away to college, it will be important to let your advisors know. Being honest with advisors will help lesson problems that may arise.

Careful planning can make the move to college an exciting and pleasant experience.

MANEUVERING THE INSURANCE MAZE

Before your son/daughter graduates from high school is the time to evaluate and know what your insurance policy says. There are several options to take into account when your son/daughter approaches adulthood, whether attending a college or university or entering the workforce.

ENTERING COLLEGE

  • In order to maintain dependant status on most medical insurance policies your son/daughter must maintain full time student status (at least 12 credits).
  • Make sure that you know the age at which your son/daughter is no longer eligible as a dependant on your medical policy. If a dependant is going on to higher education this age will probably be 22 – 24 years of age.
  • If your dependant is going out of state to attend school, make sure that your policy covers out of state expenses.
  • If your policy requires a PCP (Primary Care Physician), check the list to see if the HTC physician is listed. If not, find a PCP in the area that can manage your son’s/daughter’s medical affairs. Your current PCP can refer you to someone in the area.

ENTERING THE WORKFORCE

  • If your son/daughter has decided not to further his/her education at this time, check your medical policy to see at what age he/she is no longer eligible as a dependant on this policy. This age is usually 19 years old.
  • It would be beneficial for your son/daughter to search for a job where the company offers medical insurance benefits. Many companies offer benefits to part time employees after a waiting period of 9 – 18 months.
  • During this transition time, you can maintain COBRA coverage for your son/daughter on your current insurance policy. You will have to pay additional premiums and can maintain COBRA for 18 months. If necessary, you will be able to extend COBRA coverage for an additional 18 months, based on your son’s/daughter’s bleeding disorder (disability). But keep in mind that this extended coverage will be extremely expensive.
  • If your son’s/daughter’s employer does not offer medical benefits, check into your state medical programs….Medicaid, State Hemophilia Program, Adult Basic, etc.

If you are confused by the mountain of things that need to be done in order to maintain insurance coverage for your son/daughter, you can talk to the social worker at your HTC, or the insurance reimbursement specialist at your homecare company. They will be able help you sort through your options and make a clear, informed decision. There are also several web sites that can help you get the answers you need.

HEALTH INSURANCE RESOURCES ON THE WEB

Patient Services Incorporated (PSI)
www.uneedpsi.org (Provides health insurance premium assistance for persons with specific expensive chronic illnesses)

Families USA Foundation
www.familiesusa.org (advocates for patient rights, managed care, CHIP, minority health, etc)

Health Insurance Association of America
www.hiaa.org (provides basic information on health plans, managed care, etc)

Kaiser Family Foundation
www.kff.org (publish policy briefs on medicare, Medicaid, HIV/AIDS, women’s health, etc)

Free/Low Cost Healthcare and Drugs

Hill Burton Program
www.hrsa.dhhs.gov/osp/dfcr (lists facilities in each state that offer free/reduced medical services to the uninsured)

Pharmaceutical Research and Manufacturers of America
www.phrma.com (Has a directory of Prescription Drug Patient Assistance Programs)

www.needymeds.com (Searchable database of pharmaceutical manufacturer’s drug assistance programs)

National Conference of State Legislatures
www.ncsl.org/programs/health/drigaid.htm (offers info on state drug assistance programs for seniors/disabled)

Children’s Health Insurance

Children’s Defense Fund
www.childrensdefense.org/signup (information on applying for CHIP in each state)

US Department of Health and Human Services
www.insurekidsnow.gov (gives state specific information on CHIP Program)

The Robert Wood Johnson Foundation
www.coveringkids.org (lists state initiatives for covering uninsured children)

National Child Care Information Center
www.nccic.org (information on low cost child care)

Institute for Child Health Policy
www.ichp.edu (provides descriptive listing of Children with Special Health Care Needs (Title V) programs in each state)

Family Voices
www.familyvoices.org (advocates for care of children with special health care needs)

Pharmaceutical Companies Providing Reimbursement Assistance

American Red Cross Compassionate Care Program www.redcross.org/plasma/monarcm
Aventis Behring Reimbursement Answer Line www.aventisbehring.com/na
Baxter Reimbursement Support Hot Line www.hemophiliagalaxy.com
Wyeth Patient Assistance Program www.hemophiliavilliage.com
Nova Seven Reimbursement Hotline www.novaseven.com
 
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