Financial Assistance for Kids with Tracheostomies 

Medical costs for a patient with a tracheotomy can be astronomical. Lengthy hospitalizations, home shift nursing, and equipment/supplies can mean medical costs exceeding hundreds of thousands, possibly millions of dollars, per year. It is important that you apply for all possible programs to reduce the amount you will have to pay, reduce your family stress, and supply your loved one with the best possible medical care.

Private medical insurance can be very difficult to obtain for a child with complex and expensive medical needs. Most parents must obtain coverage through an employer because these policies typically exclude pre-existing condition limitations. Insurance policies often come with a lifetime cap (a maximum the insurance company will pay out for that beneficiary on that policy), and once that lifetime cap is reached, parents may need to find a new job with employer provided insurance (and a new lifetime cap). If a parent loses their job, it's important they immediately obtain COBRA coverage so they maintain continuous coverage until they are able to obtain another insurance policy (before the 18 month COBRA period expires). Under HIPAA laws, using COBRA to prevent a coverage gap will allow them to waive the pre-existing condition exclusions in their new policy. 

Families with limited incomes can apply for regular Medicaid. Medicaid coverage can differ by state and could cover some or all of the following types of expenses: doctors, dentists, hospitals, prescriptions, home shift nursing, nursing facilities, medical equipment, medical supplies, therapy, nutritional formulas, and home modifications. 

Families with higher incomes can apply for a Medicaid Waiver that "waives" the family income and only looks at the disabled person's income. It allows people who would otherwise be ineligible for Medicaid to receive needed medical care and stay at home rather than be institutionalized. Almost every U.S. State has some type of Medicaid Waiver program (often called a Home and Community Based Waiver or the Katie Beckett Waiver). Medicaid Waiver programs differ by state but can include those expenses previously listed as covered by Medicaid in addition to case management, personal care services, respite care services, adult and/or pediatric day health care, homemaker/home health aide, habilitation, utility costs for medical equipment usage, and reimbursement for your private medical insurance premiums called a HIPP (Health Insurance Premium Payment) program. 

You can have private health insurance and Medicaid at the same time. Your private insurance will be the primary insurance with Medicaid as the secondary (to pick up the costs that your primary insurance did not cover).

The Early and Periodic Screening, Diagnostic, and Treatment (EPSDT) service is Medicaid's child health program for individuals under the age of 21. It requires that any medically necessary health care service be provided to an EPSDT recipient even if the service is not available under the State's Medicaid plan to the rest of the Medicaid population. 

Links to federal and state Medicaid and Medicaid Waiver programs: 

IT IS IMPORTANT TO MAKE SURE THAT ALL ASSETS ARE KEPT OUT OF YOUR DISABLED CHILD'S NAME (INCLUDING ASSETS LEFT IN A WILL) SO THEY CAN MAINTAIN FINANCIAL ELIGIBILITY. ASSETS CAN BE WILLED FOR THEIR BENEFIT (BUT KEPT OUT OF THEIR NAME) VIA A SPECIAL NEEDS TRUST. 

If the disabled person is a child, they may be eligible for Supplemental Security Income (SSI) payments from Social Security depending on the family income level. If the disabled person is an adult with prior work history, they may be eligible for Social Security Disability Insurance (SSDI) payments. Contact the Social Security Administration to apply. 

You can read more about SSI and SSDI at: 

If your child is still in the hospital, have the hospital apply for Medicaid and SSI before you are discharged. Applications from hospitals are approved quicker and easier than applications from parents of children who have already been discharged. Hospital Discharge Planners should be very familiar with how to apply for these programs. 

Your particular state or county may have additional programs that provide financial assistance or pay for medical and therapy expenses. Check with your local Department of Health Services and the hospital's Social Worker. 

Other Services and Financial Programs

If you have private medical insurance, you may want to have a "case manager" oversee the case (often these are RN's). They can be very helpful in receiving quick approvals and in helping you figure out how to adapt or "convert" your insurance benefits to provide the most extensive coverage. 

Your local utility company may allow you to receive a reduced rate on your utilities (typically gas and electric) under a "medical baseline allowance". Contact your local utility company for details.

Infants, children, and adults with tracheotomies can be eligible for a handicapped parking placard. To apply, you need to complete a form from your Department of Motor Vehicles and have it signed by a physician.

Children with tracheotomies often need speech therapy. Children who also have other developmental problems may require additional therapeutic services such as occupational or physical therapy. These services can be provided by Early Intervention (for children under the age of 3) or by your local school district's Special Education program (for children over the age of 3). 
Early Intervention (also called Part C) contacts by state are: http://www.nectac.org/contact/Ptccoord.asp
School districts can be required to provide a one-to-one nurse for the child in school and on the bus.

Another source of financial assistance is private and charitable organizations. There also can be a local, state, or national group that provides resources for your child's particular disability. Hospital Social Workers should be familiar with local programs that provide financial assistance. 

Financial assistance for medical related travel is available from many sources. Airfare can be provided free by major airlines and lodging can be found at reduced rates. Ronald McDonald Houses are often available.

Possible sources of travel assistance:

There are many sources of financial assistance available, but the process to receive them can be confusing, frustrating, slow, and require lots of paperwork. It's important that you be polite and persistent when dealing with these agencies. While it is difficult to act as if you might not be able to maintain your child at home if you are not approved for the Medicaid Waiver program, it is one of the program's requirements that the child be "institutionally deemed". Because budgets are tight and agencies will deny services if they do not see an overwhelming need for them, it is important that you use caution in what they see and hear. Expensive jewelry, clothing, cars; a home that is too clean and orderly; unstressed parents; and a child with mild issues can all be perceived by the reviewer as justification that you don't need financial assistance or services. While it's difficult to present your dirty laundry to a stranger, it is important that these agencies see parents and children in real need of services. The hassle of going through the approval process is well justified when you start to receive the benefits of these programs. 

Updated February 2004
Prepared by Kathy Rowe
Mother to the darling and much loved Rachel Rowe born 8/98 with Williams Syndrome; bilateral vocal cord paralysis; tracheotomy (9/98-9/03); g-tube; reflux; heart, lung, and renal stenosis; nephrocalcinosis; moderate mental retardation; ADHD; and a very charming but busy personality.
Southern California

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