Health Insurance/Financial Aids

Health, life, and disability insurance policies are intended to provide you and your family with protection from catastrophic expenses and losses. As you know, health coverage is one of the most important benefits you can have from your employer. The self-employed can often find coverage through industry or professional associations. Others choose individual policies (if they can afford them).
For your medical coverage to work well, it is essential to understand your policy and to insist on getting everything in writing. The policy explains what benefits are covered and are not covered, the insurance company's obligations, your obligations, and how to appeal if a claim is denied.
Of course, few of us are experts on medical coverage, but with an understanding of the basics, you will be able to ask the right questions. Begin by identifying the types of medical coverage. The details of any of these plans can vary.

Health Maintenance Organization (HMO)

Under this type of plan, you must use hospitals affiliated with and doctors employed by the HMO. Also you must get a referral from your primary doctor to see a specialist. Your total cost for each doctor's visit is usually limited to a co-payment and your doctor usually submits paperwork to the HMO for you. HMOs typically offer coverage for preventive care services.

Preferred Provider Organization (PPO)

This type of plan has a network of providers from which you may choose and there is usually a co-payment for each visit. You may have the option to see out-of-network providers, but you will have to pay more than if you see a network provider. You may not need a referral from your primary care physician to see a specialist if the specialist is also in the network. PPOs typically provide some coverage for preventive care.

Point-of-Service Plan

This type of plan is the most flexible of all. It has provisions similar to the HMOs, PPOs, and Fee-for-Service plans. Much like an HMO, the lowest out-of-pocket costs come if you use specific participating providers. The next lowest out-of-pocket costs come from using listed providers, similar to a PPO. The highest out-of-pocket costs come from using providers that are not affiliated with the plan at all. The name says it all - the point (or place) where you receive the service influences your out-of-pocket cost.

Fee for Service Plan

Under a traditional fee for service (or indemnity) plan, you can go to any doctor you choose and you don't have to get a referral to see specialists. However, these plans are often more expensive than other plans. Fee-for-Service plans usually pay only for medical expenses related to illness and accident and not for preventive care. You will also have to pay for your expenses up to a pre-determined amount (or 'deductible') before the plan will pay any claims. Even after the deductible has been met, you may have to pay a portion of the expenses, often 20%, with the insurance company paying the remaining 80%. Unlike other types of plans, you may be required to pay for services up front and then submit the bill to the insurer for reimbursement.

Exclusive Provider Organization (EPO)

This plan generally operates like an HMO, but the providers are not employees of the EPO. An insurance company generally manages an EPO while an HMO is a business unto itself.

Things to Think About No Matter Which Type of Insurance You Have

  • Does the plan allow seeking out and using specialists that you need?
  • Which hospitals can you use?
  • Does the policy cover the type of medicines you need?
  • Does the plan cover the specific procedures and therapies you need?
  • Does the plan limit the number of times per year that a certain item or procedure will be covered?
  • Does the plan cover assistive technology?
  • Does the policy cover assessment for mental and physical disorders?
  • Is there a lifetime maximum limit on what the policy will cover?

Making Your Policy Work For Your Special Needs

  • Ask to work with one insurance case manager. This helps both the consumer and the insurance company by having one person that knows your needs and can manage your claims effectively. It is best for the individual or family to communicate with this person on an ongoing basis.
  • If you are denied coverage for a therapy, treatment, or an assistive device that you know you need, don't take "no" for an answer. Ask for the exact reason for the denial. Then collect all documentation that explains the need for treatment and consult your insurance policy for the proper appeals process. Insist that your insurance company and all health care providers supply all information related to the claim in writing.
  • Keep detailed, written records of everything related to your child's condition. These will also be very helpful for tax deductions and in all necessary stages of appeals.
  • Don't hesitate to appeal decisions that are not in your favor.
  • Ask your employer to change the benefits in your company's plan if the current benefits exclude what you need covered.

Lifetime Maximums

If an individual is reaching the lifetime maximum on a medical plan, the individual may be able to obtain new insurance without having to wait through a pre-existing condition exclusion period if the following apply:
  • The individual has had continuous medical coverage for at least 18 months;
  • The individual has already met a pre-existing condition exclusion period; and
  • The individual has not been without insurance for more than 62 days.
Another option may be to change insurance carriers during an open enrollment period if an employer offers health insurance from more than one source. If an individual changes jobs and the new employer has health coverage, the coverage starts over. If an individual meets the criteria above, the waiting period will not apply. If the criteria have not been met, the individual will be subject to a waiting period before the new plan will pay for the pre-existing condition. Check with your employer for details.

What is the Consolidated Omnibus Budget Reconciliation Act (COBRA) ?

COBRA is a federal law that serves two purposes. First, it can extend health care coverage for 18 months past the end of employment if an individual has had medical coverage with an employer. Second, it can help you qualify for a private health care policy. For example, if an individual stays on COBRA until it runs out, you cannot be turned down for a private health care policy. The individual must purchase the private policy within 180 days from the date that COBRA runs out. If the individual obtains group insurance with a new employer, the new employer cannot charge the individual higher-than-standard prices, even if there is a long-term health problem.
For details on this insurance, visit: COBRA (United States Department of Labor).

Inadequate or No Medical Coverage

What are the options when a person has no insurance coverage, when medical coverage is inadequate, when medical coverage isn't affordable, or when a person is uninsurable?


A federal program, administered by individual states, that covers the cost of some medical care. To qualify for Medicaid benefits, income and assets must be below a certain level. There are a few different categories under which a person may qualify.

Medicaid Waiver

These programs are for individuals with disabilities and/or special health care needs who would otherwise be ineligible to receive Medicaid benefits because of income and assets. In addition to medical coverage, waiver programs may cover a number of other services and supports not traditionally covered by Medicaid. You must qualify before you sign up for most waiver programs. Qualified individuals should sign up even if it means being placed on a waiting list.


This is a government program available to individuals with specific disabilities, such as chronic renal disease. An individual can receive Medicare benefits if they have worked enough to be covered by Social Security Disability Insurance, or if they have a parent who is already receiving Social Security.

Non-Medical Benefits From the Social Security Administration Supplemental Security Income (SSI)

SSI benefits are available to children with disabilities, under the age of 18, whose disability is expected to last more than 12 months or result in death, and whose parents' income and resources are limited. When a child reaches 18, he or she then needs to qualify based on his or her own income and assets and must meet the required guidelines.
The process of applying for SSI can be lengthy, so plan to start well before the youth's 18th birthday. There will need to be documentation of any income and expenses. Many questions will be asked about the youth's disability, which will need to be supported by medical records and written statements from professionals.

Social Security Disability Insurance (SSDI)

SSDI benefits are payable to children, under the age of 18, if they have a parent who qualifies for or is collecting Social Security Retirement or Social Security Disability Insurance. If a parent has died, children under the age of 18 may collect dependent SSDI benefits on the parent's record if qualified. These payments are available to all children, regardless of whether the child has a disability. SSDI benefits from a parent's Social Security can continue to be paid into adulthood, if the child has a disability that began prior to the age of 22.


Information & Support

For Parents and Patients

Health Insurance Marketplace (
Sometimes known as the health insurance exchange, the new Health Insurance Marketplace helps uninsured people find health coverage that meets their needs and budget. Part of the Affordable Care Act.

National Disability Navigator
This fact sheet is intended to help Navigators answer specific questions that people with disabilities might ask about benefits and coverage available through the Health Insurance Marketplace, supported by the American Association on Health and Disability (AAHD).
Free, confidential tool that helps you find government benefits children/families may be eligible to receive. Extensive.

Official U.S. government site for Medicaid services.

Official U.S. government site for Medicare services.

Tutorial on Medicaid and CHIP Health Insurance
A tutorial on the basics of Medicaid and CHIP, the many different populations these programs serve, the changes they are undergoing as a result of health care reform and some options to help readers think about opportunities to improve services for CSHCN through communication and collaboration with Medicaid and CHIP staff. A collaboration of NASHP and the Catalyst Center. 2012

Catalyst Center: Financing Care for CSHCN
The Catalyst Center is dedicated to improving healthcare coverage and financing for children and youth with special health care needs (CYSHCN). It is funded by the federal Maternal and Child Health Bureau, Health Resources and Services Administration, and US Department of Health and Human Services.

Social Security Administration Application Process
Disability determinations are generally made by a disability determination service (DDS) and can take several months. However, if a child has a diagnosis that provides for presumptive eligibility, a letter from the doctor certifying the diagnosis and its severity will allow for the patient to begin to receive services for up to 6 months while the application is being processed.

Voices for Utah Children
User friendly web site provides information and tools you can use to find: The Utah KIDS Count Project collects and publishes statistics that measure the status of children in Utah. Learn more about issues and elected officials and effect change through web-based grassroots efforts.

Family Insurance Coverage for a Disabled Adult (Word Document 115 KB)
Utah law,, about requirements for health insurance; from the Utah Family Voices Health Information & Support Center.

Growing Up (Word Document 118 KB)
A fact sheet about planning the the health care transition of youth with special health care needs; topics include health care finance, guardianship, SSI, medical home, and how Family Voices can help; from the Utah Family Voices Health Information & Support Center.

Health Insurance Tips (PDF Document 34 KB)
One-page of tips on health insurance from the Kentucky Commission for Children with Special Health Care Needs.

Parent's/Caregiver's Transition Worksheet (Utah Family Voices) (Word Document 52 KB)
A printable worksheet to help parents and caregivers determine strengths and needs to help their youth transition to adulthood.

Youth/Young Adult Transition Needs Assessment (Word Document 91 KB)
Provides a user-friendly worksheet to help the youth or young adult with special health care needs prepare for transition to adulthood; from the Utah Family Voices Health Information & Support Center, adapted from Florida.

Tracking Medical Bills (Word Document 125 KB)
This form, developed for Tennessee's Family Information Notebook, provides a way to track bills including dates, insurance company, who paid, and more. For a PDF version and other forms, see the Care Notebook page.

Transition Timeline (PDF Document 32 KB)
This sample timeline from the Intermountain Collaborative, for ages 2-22, provides suggestions for things that parents and providers should be teaching and checking as children transition through different age ranges and on to adulthood.

Use SSI to Get Ready for Your Future (PDF Document 33 KB)
This handout provides brief tips for young adults as they consider how work will impact their SSI and Medicaid Benefits; from the Kentucky Commission for Children with Special Health Care Needs.

UnitedHealthcare Children's Foundation
The UnitedHealthcare Children's Foundation is a nonprofit charity. Apply for grants for medical needs not covered or not fully covered by a commercial health insurance plan.

Services for Patients & Families in New Mexico (NM)

For services not listed above, browse our Services categories or search our database.

* number of provider listings may vary by how states categorize services, whether providers are listed by organization or individual, how services are organized in the state, and other factors; Nationwide (NW) providers are generally limited to web-based services, provider locator services, and organizations that serve children from across the nation.

Authors & Reviewers

Last update/revision: December 2008
Current Authors and Reviewers:
Contributing Author: Gina Pola-Money
Reviewer: Alfred N. Romeo, RN, PhD
Funding: Thank you to the Utah Medical Home Young Adult Advisory Committee for reviewing this section.
Authoring history
2005: first version: Robin PrattCA; Barbara Ward, RN BSCA; Joyce DolcourtCA; Kristine FergusonCA; Teresa Such-Neibar, DOCA; Lynn Foxx PeaseCA; Helen PostCA; Roz WelchCA
AAuthor; CAContributing Author; SASenior Author; RReviewer