Thursday, August 1, 2013

Get Ready ‘Cause Here it Comes…

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One of my early blogs was healthcare reform 101 for family caregivers of kids with special needs.  Reforms for children included no lifetime caps, no cancelling policies, continued coverage until age 26, and free preventive care.  This helps families of children with special needs financially.  Please note that some plans may be grandfathered (most won’t be) and won’t have to follow prevention requirements, and that requirements are stronger for group rather than individual health plans.  However, if your state has better benefits such as dependent coverage, preexisting condition coverage, or mental health parity that’s better than the federal law, state law will still apply.  By getting the best healthcare for your child and family, it will give you peace of mind, especially that your child with special needs will get necessary care.

One-stop Shopping
Did you know that starting Oct. 1, there will be “exchanges” now called “marketplaces” where families who need health insurance can have one-stop shopping for health plans? The Marketplace will have “qualified health plans” which must include “essential health benefits”.  Essential health benefits include: “ambulatory patient services; emergency services; hospitalization; maternity and newborn care; mental health and substance use disorder services, including behavioral health treatment; prescription drugs; rehabilitative and habilitative services and devices; laboratory services; preventive and wellness services and chronic disease management; and pediatric services, including oral and vision care.” According to, a marketplace is “a new way to find health coverage that fits your budget and meets your needs. With one application, you can see all your options and enroll.”  There will also be “advanced premium tax credits” to help lower income families afford insurance and the Marketplace will automatically let you know if you qualify.

Special notes on disability issues: 
The Marketplace will only select one plan.  Families with children who have special needs may also be able to have private insurance as well as Medicaid and/or Medicare.  Also, even before healthcare reform most states have a “certification of the handicapped” provision, now usually called “disabled adult dependent,” that allows families of children with developmental disabilities to keep the dependent covered as long as the parent is employed regardless of the age of the child (so you would need to get the form from the insurance company before the child turns 18.)  Also, even if a child didn’t qualify for Medicaid because of family income, at age 18 the child is considered a “family of one” and may then be eligible.  Also some children may be dually eligible for Medicare for example, those with kidney disease or whose parents retire.  I bring these issues up so that families are aware that their child with special needs could have both public and private insurance with “coordination of benefits” which means that the family would have less out of pocket expenses.  It has helped our family not go into medical debt.

What’s Next?
You can check out the video on what’s coming in the next few months in the Marketplace at  Again, this will also let you know if you qualify for help to pay for insurance.  There is also a glossary of new healthcare terms under search on the homepage of  In addition, there will be help available to families from “navigators”, “certified application counselors” and some states will have “in-person assistors.” 
For families that can’t wait for coverage
There is a plan finder already on but the actual Marketplace will be up 10/1.  Before 1/14, health plans could still deny coverage if you have a “pre-existing condition”, women may be charged more, check what’s covered as there aren’t yet essential health benefits, and families can’t yet get help paying for insurance.   So remember that ACA protections won't be in place in plans until Jan. 2014 but this is a good safety net for people who may not be able to wait.

So get ready to “shop ‘til you drop” starting in Oct. to get the best coverage for your child and your family.

Resources on health care reform for families of children with special needs:

Ongoing information on healthcare reform and children with special needs.
*Georgetown Center for Children and Families
Up-to date information on how healthcare reform affects children and their families.

Information on the Marketplace, tax credits, terms, and healthcare reform in general.

 If you need insurance now: 


 Remain Hopeful,


Lauren Agoratus is a parent/advocate who serves as the NJ Coordinator for Family Voices, a national network that works to “keep families at the center of children’s healthcare” at or FB  She also serves as NJ representative supporting caregivers across the lifespan for the Caregiver Action Network (formerly National Family Caregivers Association) in a volunteer capacity at or FB