Approximately 9 months ago my child, who was born with a rare brain malformation, received an emergency waiver and it couldn’t have come at a better time. My beautiful child was regressing both developmentally and medically before my eyes. You see he had been on the waiting list for the NOW waiver for numerous years, but as I sat holding my seizing child, struggling to breath, needing constant 24/7 care in my arms one night I knew that he would die before his name appeared at the top of the list.
“The mission of the NOW (New Opportunities Waiver) is to utilize the principles of self determination to supplement the family and/or community supports while supporting dignity, quality of life, and security in the everyday lives of people while maintaining the Recipient in the community.”
Most people you meet know nothing of this waiver provided by the state’s Department of Health and Hospitals. They don’t know that it provides resources, respite care, Medicaid, a life at home with the person that is disabled.. They don’t know that thousands of families fight to keep their loved one at home, rather than place them in an institution. They don’t know that raising a child or adult with developmental disabilities takes people–more than two hands– to help support this child on a daily basis. They don’t know that raising this citizen requires an insurance that works with them approving their 12 monthly prescription medications, 17 yearly hospital admissions, wheelchairs every few years, suctioning machines, chest percussion machines, breathing machines, oxygen, and the list goes on and on. They just don’t know.
Connor lived a happy, relatively healthy life for his first 5 years here on Earth. He had few hospital stays and needed very little “help” in raising and caring for him. The most we dealt with was seizures, but medications were somewhat controlling them. My husband and I felt blessed that our child that had such a grim prognosis was actually thriving.
Then the bottom fell out.
Connor endured a seizure lasting longer than 36 hours and was placed in an induced coma to relieve his brain from the relentless seizing. Doctors informed us of a few possibilities that would impact our child that night in PICU Room 8 in Children’s Hospital of New Orleans. So we held hands, held our breath, and prayed that God would intervene and save our miracle boy-restoring him to the happy, mobile, verbal child that he once was.
A week later he groggily opened his eyes. And smiled.
My heart leaped, rejoicing that his brain hadn’t sustained significant injuries from the status seizure. That familiar toothless smile gave me hope.
We brought him home ready to resume our lives. However, that wasn’t in the plan. His seizures became more frequent and were hard to control. He went from taking two anti-epileptic medications to six with two rescue medications. As the medications grew in number and strength, my child’s ability to maintain muscle tone and alertness fell. Before I knew it my boy was asleep 22 hours out of the day and the two hours he was awake he was in a staring seizure. This type of life-day in and day out-led to being completely nonverbal, loss of holding his head up, no longer using his arms or legs, completely feeding tube dependent, and his immune system weakened. A simple cold virus was landing us in the PICU more often than not, where he required oxygen or a breathing tube. Our lives had turned upside down and we mourned the loss of the child we once had.
I found myself exhausted from caring for him-suctioning, lifting him, vest therapy, airway clearance, bathing, transferring him from the car to his chair, monitoring his breathing, stopping while driving to attend to his constant secretions on the side of the road-it was too much for one person alone. My husband and I both had full time jobs, but were having to take off frequently for hospital stays, illnesses, and because he couldn’t attend school without catching something. I had no where else to turn and my other two children were suffering because of it. Putting my child in an institution and living life in a hospital were not options I was willing to make.
Then a light shined upon us…
A fellow parent of a child with special needs helped me navigate my way to applying for an emergency waiver. Fast forward five months and our life was flipped right side up with Connor’s approval of the NOW waiver. I had no clue how much it would mean to my family.
So what all is this waiver doing for my son and our family? Well, first and foremost I have an extra set of hands on board. He has a loving nurse and respite care attendant that help me care for him, keeping him happy and healthy AT HOME. He has Medicaid insurance which relieves an ENORMOUS financial burden off my husband and I for his 12 prescription medications, hospital stays, surgeries, equipment, etc. He has a coordinator that assists us in every aspect of his life ensuring that he gets what is needed so that we can continue to care for him in the comfort of our own home. He has funds to buy essential equipment or house modifications that insurance doesn’t pay for.
This waiver provides my family with quality health care and the ability to watch my child enjoy his life like he was intended to. He gets to hear his brothers everyday as they enter and exit his room talking to him and giving him hugs, he gets to feel the comfort of his momma’s arms wrapped around him every single night as his care attendant assists in his other needs, he gets to ride with his daddy to go check on the cows in the evenings without fear of contracting an illness from a stranger outside. This waiver enables my child with numerous special and medical needs to thrive at home with his loved ones, while still having access to his community.
It’s a game changer and one that he cannot live without.
As of January 2016, the waiver programs here in Louisiana are in danger of being cut if legislators do not assist our Governor in finding additional funding to fill our state’s billion dollar deficit. Waiver programs are optional and not mandated, therefore they are always on the chopping block when addressing the state’s shortfall. The waiver programs are currently assisting over 8,000 individuals just like my son and to remove the waiver from them–well it will have devastating and disastrous consequences.
If you are caring for someone that is either on the waiver program or are waiting, know or love someone like described above–I urge you to contact Louisiana’s state legislators explaining how the cuts will affect these families and how additional revenue must be raised in the upcoming special session in order save Louisiana’s most vulnerable citizens.
We have to be the voice for the voiceless and show their life is just as valuable as all others.
Find your local legislator and his or her contact information at the website below..