As a father, I know how strongly we all want the best possible future for our children, one that’s happy, healthy, and full of educational and job opportunities. And as the father of a special needs child, I also know that achieving that future requires extra effort.
While many opportunities exist to improve the well-being of our children, there are areas that are ripe for reform. I have introduced two pieces of legislation towards that goal – help for families on Medicaid whose children are facing life-threatening illnesses and assistance for the long-term needs of special needs children in military families.
Nearly 30 percent of children with life-threatening illnesses qualify for Medicaid. Last month, I introduced H.R. 4147, to improve the health care and treatment for these kids by allowing states to bypass the years-long application process to include the Children’s Program of All-inclusive, Coordinated Care (ChiPACC) in Medicaid services.
Based on the model of care developed by Children’s Hospice International, ChiPACC provides seriously ill children an individualized and comprehensive treatment plan that combines hospice services, counseling and respite with presently-available Medicaid curative care and support services.
There are currently only five states providing ChiPACC services as part of state Medicaid programs. Because seriously ill children are much more likely than adults to go in and out of terminal phases multiple times; without services like ChiPACC, Medicaid children in the remaining 45 states too often rely on the Emergency Room for primary care. This practice is not the preferred method of care and increases the cost of Medicaid. This legislation makes it easier and quicker for states to provide the best care to its young people, keeping them in a safe, familiar environment, instead of a hospital.
While extending access to ChiPACC services would provide immediate help to seriously ill children, parents of special needs kids must also plan for a time when they will no longer be able to care for them. Legislation I introduced this week will help military parents approaching retirement save not only for their own future, but for the care of their children after they pass away. A Special Needs Trust (SNT), available to most Americans, allows parents to set aside retirement funds for special needs children.
Unfortunately, there is no equivalent within the military retirement system. A military retiree can dedicate up to 55 percent of his or her monthly retirement pay to provide a monthly survivor benefit after he or she dies. But without a SNT, distributed benefits are counted as income, disqualifying these children from Medicaid and Social Security Disability Insurance assistance.
To fix this loophole, I introduced the “Disabled Military Child Protection Act of 2012,” to allow military retirees who invest in a Survivor Benefit Plan transfer benefits to a Special Needs Trust. If passed, the legislation would immediately allow more than 1,000 severely disabled military dependents to remain eligible for federal assistance while accessing their special needs trust. When health care costs for disabled children can top $100,000 a year, parents should be given every opportunity to plan for their children’s future.
Regardless of political party, we all want to leave the world a better place than we found it. There is nothing partisan about protecting and preserving the health of our children and I hope these two pieces of legislation gain support from my colleagues.
Rep. James Moran (D) is Virginia’s 8th Congressional District Representative in the U.S. House of Representatives.