Waking me while I sleep during the day is like waking a sleeping bear, and can be detrimental to your life. My hubby knows this well. But being awakened, after only having been asleep for about an hour and half, to get the news we got on Thursday was well worth the lost zzzzz's. Who am I kidding, I was right back to sleep, only happier!
We received news Ethan has been approved for the Sarah Lopez Waiver. The Lopez waiver is a Missouri program designed for children like Ethan with parents like us. There are guidelines and criteria. An application process, and only 216 spots in the entire state of MO. We began putting together the packet last November, met with the intake coordinator in April of last year and were told we would probably be on the waiting list for 2-5 years. 10 months is unheard of!!!
The waiver is for kids with a "permanent and total disability" who because of parental income levels are unable to qualify for any type of funding for the child's needs. It is for families who want to continue to care for their special kids at home, with no intention of seeking institutionalized care, but need a little financial help. I don't know all the exact details of the waiver, but this I know:
We, and Ethan will be re-evaluated annually for eligibility, and as long as we meet criteria, he can remain on the waiver until he is 18 years old.
This is why the wait to get on the waiver can be so long.
A portion of the funds MUST be used for respite care or nursing care.
A portion of the funds will cover equipment needs.
Ethan's diapers and formula will be covered. Woo-hoo and snap clap!
We don't receive any funds, we pick up the supplies at a specific location, or they are shipped to our home. Nursing care and respite care is paid through the waiver.
Ethan's private insurance coverage will remain in place, primary, and billed first. Only after that will Medicaid consider charges.
With more surgeries for me this year, having care for him while I'm at home recovering keeps Brian from having to use vacation and sick time. Because although I'm home, I won't be able to pick him up, or put him on the bus, or even get him out of his bed.
Having his diapers and formula covered means we don't have to fret about how to feed or diaper him while I'm not receiving a paycheck.
Having respite care means we both can attend the other children's events Ethan would not enjoy or do well at, and the guilt as a parent of having to chose which to do.
As one other amazing special needs Mom wrote me- "it's life changing".
Caring for a special needs child, especially one with the level of care Ethan requires is a full time job in itself. A job I love and cherish, but can be exhausting while also working a full time job.
He will never, and I mean NEVER be able to care for himself.
He will wear a diaper forever.
He will more than likely never be able to obtain enough nutrition other than by tube feeding.
We could lose him any time to a simple cold.
He will never walk, talk, play little league, go to college, marry or have children.
I don't tell you this for pity, that is the last thing we want people to feel for him. I tell you this to give you some picture of what our daily lives are like with him. Our schedules revolve around him and his needs. And many times the needs of our other children, and often ourselves come second. Not anything any parent wouldn't do, but ours will never grow up and lead his own life.
He and his needs are with Brian and I forever. He is our very own little Peter Pan.
He does make us laugh, smile and see the world in a different light. Ethan sees no hatred or prejudice, and wants for nothing more than to be held and tickled and listen to Taylor Swift and hang out with his sissy and his Bo-Bo. To roll around on the ground and watch his crazy dancing light up toys and chew on his fingers.
He really is simple. In a complicated little body.
We are thankful God gave us him.
And the Lopez Waiver will help make his life, and ours a little bit easier.
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