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Coverage considerations planning ahead for your family's care: as the first of the year draws closer, you may be wondering how the Affordable Care Act (ACA) will directly affect you and your family. Knowing about the changing system and enhanced coverage--including some preventive care and testing service--may be helpful when evaluating future healthcare costs for your family.

As the parent of a child with special healthcare needs, you know that healthcare costs associated with complicated medical conditions can affect a family's financial stability as well as long-term financial planning. As the first of the year draws closer, you may be wondering how the Affordable Care Act will directly affect you and your family. As changes are implemented across the nation and on a state-to-state basis, there are a lot of questions about how it all works and what exactly is covered. Many people won't notice big changes in the way they receive their coverage or the benefits they receive, but knowing about the changing system and enhanced coverage, including some preventive care and testing services, may be helpful when evaluating future healthcare costs for your family.


The ACA will affect coverage for individuals and families in a number of ways. Beginning October 1, 2013, each state opened a health insurance exchange, called a "Marketplace". The purpose of the Health Insurance Marketplace is to provide information about the plans available for individuals and families are not covered through an employer or those that need extra coverage, as well as, owners of small businesses. Each state has their own Marketplace, and many of them are available online to make buying coverage as easy as possible. The Marketplace allows individuals and small businesses to compare the prices of different plans with what each plan offers so that everyone can make the most cost effective and applicable decisions for themselves. Visit to find out how the Marketplace will work in your state.

Plans purchased through the Marketplaces will take affect January 1, 2014. If your child with special healthcare needs has coverage exclusively through your private insurance, it may be helpful to talk to your child's healthcare provider about what to expect in the future. This can be items like major procedures, treatments, and/or monthly expenses associated with the condition. This will allow you to determine what will be covered by certain plans and what you will need to cover yourself. Through the Marketplace you are able to purchase additional coverage in anticipation of future needs. If you find that a certain plan is not covering enough of your expenses, you may qualify for additional help from the state.

Under the Affordable Care Act, all new health insurance plans must:

* End lifetime limits on coverage

* End arbitrary cancellations of health coverage

* Cover adult children up to age 26

* Provide a Summary of Benefits and Coverage (SBC)--a short, easy-to-understand summary of what a plan covers and costs

* Spend your premiums on health care, not administrative costs and bonuses


The Affordable Care Act that will expand health coverage in vital ways, but unfortunately not everyone will receive these benefits automatically. Some of the new benefits do not apply to plans that were in existence prior to March 23, 2010. These plans have been given the status of "grandfathered," and will be able to continue to provide coverage to individuals without being subjected to the new regulations faced by newer plans. This means the status of a plan as "grandfathered" depends on when the plan was created, not when you joined the plan.

Of all of the benefits the ACA provides, grandfathered plans do NOT have to cover preventative care for free, guarantee your right to appeal, protect your choice of doctors and access to emergency care, or be held accountable through Rate Review for excessive premium increases. In addition, if you have a grandfathered individual health insurance plan, your insurance company does NOT have to end yearly limits on coverage or cover you if you have a pre-existing health condition. This can be a big problem financially for people with genetic conditions.

If you or your family receive coverage through an employer and are not sure when your plan was created, be sure to ask your Human Resources department if your insurance plan is grandfathered. This will allow you to decide whether or not you will need to purchase additional coverage through the marketplaces before January 1, 2014. You will still be able to purchase extra coverage after this date, but only during special enrollment periods, so be sure to check the status of your current coverage and enroll if necessary before the end of the year.


Essential Health Benefits (EHB) are minimum requirements for all plans in the Marketplace that are not grandfathered. Plans may offer additional coverage, and this can be seen when you compare them side-by-side in the Marketplace. EHB include at least the following items and services:

* Ambulatory patient services (outpatient care you receive without being admitted to a hospital)

* Emergency services

* Hospitalization (such as surgery)

* Maternity and newborn care (care you receive before and after your baby is born)

* Mental health and substance use disorder services, including behavioral health treatment (this includes counseling and psychotherapy)

* Prescription drugs

* Rehabilitative and habilitative services as well as devices to help with injuries, disabilities, or chronic conditions in order to gain or recover mental and physical skills

* Laboratory services

* Preventative services, wellness services, and chronic disease management

* Pediatric services

The ACA also covers some genetic tests. Plans cover both general cancer prevention services, as well as services for those at increased risk of cancer due to family history. In addition, all conditions on the Recommended Uniform Screening Panel for newborn screening will be covered with no copay, even if they are not on the state panel.

Essential Health Benefits (EHB) vary from state to state because states were given the option to choose one of four kinds of current plans to use as a model. You can find your state's plan at In addition, you can find a guide to reviewing additional information about EHB including benefits, limits, prescription drug coverage, and specific information on your state-required benefits, at

Keep in mind however, that these changes only apply to plans that are not grandfathered, and you should be sure to check the status of your plan before the end of the year to see if purchasing extra coverage will be necessary.


As a result of the Affordable Care Act, it is now illegal for an insurance company to deny you or your family coverage because of a pre-existing condition. In addition, there are no longer lifetime or annual limits on coverage. This means that your health insurance company cannot kick you off of your plan or not pay for certain services because you have exceeded a yearly or overall spending limit on essential health benefits. For families of children with chronic and lasting medical conditions, this is a crucial and exciting change.

Furthermore, children are now allowed to stay on their parents' health insurance plans until they are 26 years old. This allows for these individuals to avoid gaps in their coverage and care. In addition, very low-income, childless young adults may be eligible for their state's Medicaid program. Many states have chosen to expand their Medicaid eligibility to cover a much larger percent of the state's population, allowing for increased coverage.


A new provision in the ACA supplements the Genetic Information Nondiscrimination Act of 2008 (GINA), which prohibits health insurance companies from changing your premiums or denying healthcare coverage based on genetic test results. However, these laws do not provide protection against discrimination for other types of insurance including life, long-term care, and disability insurance. This does not mean that these companies will discriminate against you or your family, but it is important to keep in mind that, at the time, there are no protections to make sure it does not happen.


(1.) Cliffs Notes Version of the Affordable Care Act, Forbes:

(2.) Insurance and Financial Planning, Genes In Life:

(3.) GINA & Your Health Insurance, GINA:

(4.) How does the health care law protect me?

(5.) Nine Questions about the Affordable Care Act: What Center for Jewish Genetics Constituents Need to Know, Center for Jewish Genetics:

(6.) What patients need to know about the Affordable Healthcare Act (ACA), Yale Cancer Center:


The world's leading nonprofit health advocacy organization committed to transforming health through genetics and promoting an environment of openness centered on the health of individuals, families, and communities.


Genes in Life

Genes in Life provides a helpful overview on financial planning and insurance. The site provides great resources and ideas for proactive planning both financially and emotionally. is a great resource to learn all about the Affordable Care Act. This link takes you to the section on the rights and protections the law provides.

The Catalyst Center

The Catalyst Center provides a directory of organizations, sorted by state, that may be able to help families with questions about coverage and financing care for children with special health needs.

Robert Wood Johnson Foundation

The Robert Wood Johnson Foundation (RWJF) provides several timely resources for individuals and families to answer your questions about ACA and how your state will be affected.


Anna Eames is a recent graduate from Gustavus Adolphus College and is serving as an intern at Genetic Alliance with the Maternal and Child Health Program. Anna hopes to attend graduate school next fall to earn her master's in genetic counseling.
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Title Annotation:Financial & Tax Planning
Author:Eames, Anna
Publication:The Exceptional Parent
Geographic Code:1USA
Date:Nov 1, 2013
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