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Slamming Doors

Did you know Texas ranks 50th for serving individuals with disabilities?

As our children grow older and creep into adulthood, we’re going from a system that’s bad to worse. The Texas Health and Human Services Commission (HHSC) and the Texas Department of Aging and Disability Services (DADS) do not maintain what’s in the best interest of our children.

Case in point: My family’s current situation. Our older son, Nick, receives 24-hour nursing care for his significant medical needs. With continuous central lines running for hydration and nutrition, IV antibiotics and a slew of additional medical procedures, the nursing care is vital for his survival.

Nick turns 21 in October, and the state believes that his overnight services as a child/teen no longer need to be funded. The state agencies currently support Nick and his needs as a minor. But come October 21, Nick runs the risk of having all of this care stripped away. The Comprehensive Care Program (CCP) provides the round-the-clock nursing but stops when a child reaches 21. The child is then funneled into the STAR+PLUS program. Under this system, a child’s traditional Medicaid gets removed, and parents are given the option to choose a provider — two of the most common being Molina Healthcare of Texas and Superior HealthPlan — for future needs.

Being the advocates we are for our two sons (and wanting to stay ahead of the game), we reached out to their doctors and home health providers several months ago to see if they accept these programs. Out of the 16 doctors my boys see, not one accepts (or is willing to accept) these policies. So the home health company that provides our son’s IV nutrition and hydration — basic human needs — doesn’t take it either.

Just to get the ball rolling, we chose Molina to begin the assessment process and come to complete an intake assessment for the STAR+PLUS waiver program. Last week, we met with Nick’s wonderful team, including Angels of Care Pediatric Home Health, E & E Developmental Services of North Texas and Metrocare Services and participated in a conference call with HHSC and DADS to get the results of the assessment.

A representative for HHSC estimated Nick’s annual cost to be around $448,000. (Mind you, Nick’s current cap for funding through Home and Community Support Services (HCS) is $178,000 for his level of need.) And then he told us that they are denying Nick for the STAR+PLUS waiver.

Wait, what? Isn’t this the program that he’s supposed to be moved to when he turns 21? The representative explained that Nick will be kicked back to DADS under HSC. This is good, a better outlook for Nick’s future once my wife and I are gone. However, there’s a catch: Even though DADS estimated Nick’s yearly costs to be slightly cheaper at $396,000, there’s still a chance Nick will be denied.

Am I understanding this? When Nick becomes and adult at 21, he’s going to be cut off from everything? That only the “strong” survive?

Their plan? Send a doctor from DADS to our home for a visit that will last a couple of hours, after which this doctor determines if Nick will be better cared for in a Medicaid-run nursing facility. This will be fought in litigation and appeals until my last breath. My son will not be placed in a poorly run, understaffed facility. Or the doctor may decide that Nick will be better cared for at home (the only acceptable answer). If the latter is, in fact, his conclusion, the DADS doctor asks the state to use general revenue funds to cover the difference in cost between Nick’s approved funds and the guesstimate cost of his care.

This can go three different ways:

–       The DADS doctor decides Nick goes to a nursing home, which will not go down without a battle, several years of litigation and an obscene amount of tax payer dollars.
–       The doctor decides Nick is better cared for at home and requests general revenue. If Nick’s denied, we can appeal but only up to the $178,000 cap.  If we did come out on top of this situation, it will strip Nick of all his community supports and cut his nursing down to part time.
–       The third, and best outcome, involves the doctor deciding that Nick stay at home, and the general revenue funding supports his true needs.

Needless to say, we’re beside ourselves on this. Never have we felt that our child’s life rests in the hands of strangers, strangers who care more about the bottom line.

With all this said, my wife, my children, our family and friends will win this battle for Nick. It has to be done to show Nick and others with disabilities that they matter in our society. Our faith is challenged, but will be renewed and our family is threatened but will grow stronger. Through prayer and perseverance, we will change the future for Nick and many others to come