Board member fails to understand role of entitlement programming for disabled and impoverished children

At this past Tuesday's board meeting, two fascinating things happened - George Evans was installed by writ on the CSD Board as the first non-elected nor appointed board which seriously over-shadowed the fiery debate on the role of entitlement programs in schools as they pertain to poor and disabled children.

You can listen to the debate here - the audio isn't great but if you turn your volume all the way up and put your ear near the speaker, you can get the gist of it - http://www.christinak12.org/apps/pages/index.jsp?uREC_ID=180377&type=d&pREC_ID=video&showMore=1&titleREC_ID=30378 The debate starts at about 1:15.00

I believe that public education is the greatest entitlement program ever financed by the federal government.   I believe that IDEA also serves as an entitlement program.  Both are necessary to the success of future generations of citizens.  And I believe that entitlement programs serve to satisfy a moral obligation that a society has to protect and care for those who cannot do so themselves.

As the school years wears on, banks are opening in many of our schools.  It's part of greater effort to teach financial responsibility to children and their families.  But, it's not without its pitfalls.  For one, banks are businesses and someone is being enriched by the funds deposited by children.  Because our democracy is built around capitalism its unseemly to question these endeavours.  But, there is another impact that has not been vetted and could have devastating effects on families - funds amassed by children in bank accounts in their names can derail a families access to social entitlement programs.  A fellow board member, the DSPAC president, calls this "welfare" and insists that its meant to be temporary support.

In the purest interpretation social entitlements are meant to be temporary.  Children are entitled to an education until age 18.  IDEA only guarantees FAPE until age 21.  Food stamps are predicated on income.  Social Security Disability when applied to a child can be denied when parent exceeds the asset limit.  Disabled Child's Medicaid is predicated not on a parent's income or assets, but directly on the assets of a child and the child's disability.  Even the federal nutrition program is an entitlement - based income and family size.

Each of these entitlement programs, or "welfare," are nuanced and require great scrutinization.  Everyday, families of disabled children, parents of hungry children and others embark through the application processes to determine their eligibility.  Reliance on these programs to keep children healthy, sheltered, and fed continues to grow even as signs indicate that the Great Recession has receded.  For many, these programs will be temporary.  But, not for all.  And the reasons are legitimate.

My daughter represents a group of children who rely on what is commonly called Disabled Child's Medicaid.  She has always been covered on our private insurance.  About three years ago, her medical expenses began to outspend our income.  We applied for medicaid to help us continue her medical care.  She was granted the entitlement based on her proven disabilities and her assets.  Two years ago, she was diagnosed with a new, legitimate condition which carried with it lifelong ramifications if left untreated.  The only available option was treatment was hormone therapy.  We opted for a surgical implant - it would be least disruptive when you considered the challenges of her autism.  The first implant alone cost $18,000. Her primary insurance through its specialty pharmacy covered just $6,000.  The second implant cost $20,000 (inflation).  Neither of these sums include the surgical and hospitalization costs nor the follow-up care.  If our daughter had not qualified for the medicaid entitlement program, we would have been faced with begging for help, losing our home, or failing to get our child the medical care she needed.  Medicaid covered a portion of the implant, bringing our co-pay into the hundreds of dollars, a sum we managed to cover with our home equity line of credit.

My daughter's autism will never be cured.  Like so many other families,  we have sunken deeper into debt due to an impossible economy.  My child will rely on Medicaid to help bridge the cost of her care for years to come.  My husband, parents, in-laws, siblings and I have all paid into the social entitlement system without ever collecting from an entitlement program.  We know that we have collectively funded her entitlement and we are grateful that the program exists.  Her reliance on Medicaid will not be temporary.  It is permanent and as such, we must plan to ensure she doesn't lose this benefit through her or our own actions - which brings me back to in-school banking.

I have long accepted that my beautiful daughter will always be mine.  She will likely live with me until I leave this earth.  Her care will be entrusted someday to her brother.  Her financial well-being will fall to a special needs trust.  No one in our family can directly leave her anything of value.  She will need to learn to learn an entirely different reality than her typical brother when it comes to financial responsibility.

We, as board members, have a responsibility to all children.  While most board members can avoid learning the nuances of each and every entitlement program, we are obligated to ensure that the staff who oversee the implementation of banks in schools and the businessmen who will profit from them are responsive to the varying conditions of all children.  We must ensure that they educate both children and their parents as to the effect of these accounts on entitlements, especially when businessmen are promising to match funds.  My daughter has a custodial account at a local bank.  It has about $200 in it - gifts from family members.  Under most circumstances I wouldn't share this information with anyone but Medicaid.  My daughter has been sold the bill goods on banking in schools.  She's come home excited and ready to participate.  And I have been forced to be the mean mom and tell her "no."

We're not courting a future denial from Medicaid.  If my child's combined assets exceed $600 she will lose her secondary health insurance, yet that $600 won't come close to covering the expenses of her medical conditions such as the $20,000+ expended this past July by multiple parties to cover her surgical implant. It's an unfair and untenable situation in which to place parents and it's far more common than you think.  My daughter benefits from having an informed parent, but not all parents are.

During our heated debate, my fellow board member, DSPAC president, said "I'm not talking about your daughter."  She was right and wrong.  She was talking my child and thousands of others who cannot be cured and whose income and assets can and will endanger their family's security.  Of course, we all want each individual to be financially responsible for themselves.  That is the great American dream.  But, we must recognize that we are obligated first to the children we serve and not to a misguided concept of a one-size fits all financial education.  The fact is this - for many children in our school system, we need to be teaching them a differentiated form of financial literacy - how to manage within a benefit system in the likelihood that some of our children will never be able to financially support themselves.  This is compassionate education and its not for the faint of heart. But it is a reality. 

We have no right to tell children get off welfare or to lead them blindly into endangering their eligibility when "welfare" may be all that's keeping that family afloat.  Fortunately, our presenter and implementer got the message.