The Katie Beckett waiver helps middle-class families pay for therapy and other medical costs that private health insurance won't cover. It's part of Medicaid, which provides health coverage to the poor and disabled. However, the state hadn't been applying the strict federal standard for participation in the program, said Mark Trail, director of the Department of Community Health's Medicaid program. As a result, many children had been accepted who didn't meet the criteria of severe disability or medically fragile status. Under the state's old criteria, 6,278 children received the Katie Beckett waiver. As of September, 5,419 children were enrolled, Trail said. "Some might be new families, so I can't say what number were denied," he said. The Katie Beckett program costs the state $38 million a year, an average of about $502 per child per month. The state predicted $6 million could be saved by adhering to the federal institutional guideline.Click here to read "Parents caught in Medicaid crunch" on ajc.com
All About Developmental Disabilities (AADD) is Atlanta's preeminent resource on developmental disabilities, providing support services to families for more than 55 years. We are often the one place where people with developmental disabilities can go to achieve personal empowerment, family stability and community participation. AADD provides family support; public policy and advocacy; and community engagement.
Friday, December 16, 2005
Parents caught in Medicaid crunch | ajc.com
State legislators are looking for suggestions to solve this issue, which we believe really should come out of the Governor's office. However, some have suggested that (1) DCH correctly enforce the federal guidelines for eligibility and then (2) give parents who find themselves ineligible for the current Deeming waiver the option of buying into Medicaid coverage using a sliding scale that adjusts family income for costs related to the well being of the child with a developmental disability. Read the AJC article below and then click the link to give "Comment" on what you think the solution should be...
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18 comments:
I am the parent of three children. Two of my children have a medical condition that has caused them to be physically and mentally disabled. My wife and I have begun the process of obtaining a demening wavier twice. We are overwelled by the work involved in just making it through our daily life that the extra work involved to obtaining a wavier has just not been worth it. Now that I am taking a 14% pay cut on top of a 32.5% cut just a few months ago and medical insurance program adjustments at Delta Air Lines I may try again to traverse the maze of paper work the wavier requires. If someone from the State department of human resources could just step into our lives for a while I think it would become clear to them that we need help. Anything that could be done to simplify the paper work would be much appreciated. A tax break for the parents of children with disablities may make more sense than the demening wavier. I pay more that eight thousand dollars in state income tax, which if I could keep for medical bill would help a great deal. Let me spend my own wages on my own family's needs and I wouldn't need to ask for help. Tax my property but give me a break on my income tax to pay for my extremly high medical bills. That's my idea if I were King. Thanks for listening.
"The state predicted $6 million could be saved by adhering to the federal institutional guideline." What the state doesn't seem to understand is that they will end up paying more in the long run. Schools systems will be forced to provide more services for the children who can no longer obtain private services via the Deeming Waiver. Schools will begin to see many children who have not had the proper interventions prior to entering the school system without the safety net of the Deeming Waiver. Many more families will make the difficult decision to file bankruptcy given the cost of their medical needs for their children. Children's Healthcare of Atlanta and other providers around the area will likely have to lay off speech therapists, occupational therapists and physical therapists as families pull out of these services. I don't know any family that can afford $500 a week to self-pay for therapy services for their child. Unfortunately, it is the children who will suffer most. They need consistent interventions to get their best start in life and keep up their progress. They already have such a huge battle in their lives. It's difficult to digest that saving money is the motivation for kicking so many special needs children out of this program. My child has a traumatic brain injury. She will no longer be able to receive year-round OT and Speech therapy given the fact that we have been denied the Deeming Waiver. The governor and legislators should be ashamed of themselves. They are hurting families. They are hurting children.
I am the mother of a 7 year-old girl with autism. We have been covered under the Katie Beckett waiver for three years but received our final notice of denial last week. Our insurance covers only a fraction of the therapy our daughter needs, and we are panicked that we may have to discontinue much of her therapy and medications. I would be very supportive of an alternative Medicaid plan that requires families to pay a premium for Medicaid coverage. It seems highly unfair that children who face so many challenges are currently being ruled ineligible for any assistance because they aren't severely disabled enough.
As I understand the system, it's really got some large holes in it, and people are falling through the holes... like myself; I have complications due to my son's autism, that make it nearly impossible to work a normal job, and yet, his Natural Support Waiver has been ended because Medicaid was pulled, for reasons that remain unclear, and so we no longer have any way to fund his therapies. Cobb County Schools has not been helpful either... getting someone to care for him in the After School Program failed last year, and we're half-way through the year, and they still have no one... so I have to pick him up from the bus everday at 2:30 p.m. Having more solutions for the various problems we face would be nice...
My daughter is Deaf-blind, has Cerebral Palsy, muscular dystrophy, Leber's congenital amaurosis, tube fed, oxygen dependent, and wheelchair bound. She, too, was denied Katie Beckett. I was absolutely shocked. I am a teacher and my husband works for Delta (needless to say he has had horrible pay cuts. We carry insurance on our daughter, but without the help of medicaid, she would never receive the help she needs. The paperwork for Katie Beckett is endless. I really feel for children who are PERMANENTLY disabled and their situations will not change, there should be a permenent card. There is a horrible amount of stress on families of children who are disabled. It would be wonderful if the state would reach out and make our lives easier.
Before our son got on the Katie Beckett Wavier we almost had to file bankruptcy. We did sell our home and took the equity out to pay off medical bills. This was bills that our insurance didn't pay. After getting on the Katie Becket Wavier it has helped to have a somewhat less stressful and normal life. We can focus on are son's medical needs. Now, we are faced again with losing the Katie Becket wavier. We still have health insurance through our employer but what is not covered is excessive. My son has a rare genetic terminal condidtion of "Hunter Syndrome". We will not be able to make it without this waiver. We can file bankruptcy but you can only do that once in 7 years. What are we to do? We are not looking for a handout just a helping hand. Thanks to our families help with our son my husband and I both work. We just want our son to have as normal a life as possible without having to worry about medical bills. Even the Bible tells us that we should help those that are less fortunate. Please don't take this away from those that can't help themself.
Thank you and GOD Bless,
Tressia
Before my son got on the Katie Becket wavier we almost had to file bankruptcy. We did sell our home and took the equity and paid medical bills. This was medical bills that our insurance didn't cover. Then our son got on the Katie Becket Wavier and we have had a somewhat less stressful and normal life. Now our son is in jepordy of losing his Katie Becket wavier. We have medical insurance but what our insurance doesn't cover is excessive. We could file bankruptcy but you can only do that once in seven years. What are we suppose to do? We are not looking for a hand out just a helping hand. Thanks to our family helping with our son my husband and I both work. We are trying to provide as normal of life for him as possible. He has a rare genetic termial condition call "Hunter Syndrome". Please don't take the Katie Becket Wavier away. Even the Bible tells us that we are to help those that are less fortunate. Please help those that can't help themself.
Thank you & GOD Bless,
Tressia
100%of the special children with whom I am involved,have been denied the KBW this fiscal year. The last little one denied is blind, deaf, has CP, seizures, G tube... Budget cuts needed? Don't cut medical and TX funds for GA's children.Intervention, early, is CRITICAL for health and ^ independence. Insur. covers few TXs and limits medical.^Effic. in Medicaid system,Insur.mandates,low copays would save much more than sacrificing GA kids' futures. Helping taxpaying parents now to help their children survive and thrive will decrease output of state later. If it were your child or grandchild you know you would find a better solution than cutting all assistance and offering minimal confusing and conflicting information about how to even appeal denials. Parents are using precious time formerly spent caring and habilitating their children trying deperately to get information, refilling out forms, going to court...State is also spending much in process both monetary and respect of citizens. I've met KB's mother, am with parents of special children, daily, and as a Mother myself can identify with the passion a parent feels in being able to care for their precious children. How about you...
Letter sent to Gov's Council: It’s 2 AM in the morning. I’ve been lying in bed for over an hour worrying about receiving our denial for our Medicaid renewal under the Katie Beckett waiver that we received today. I’m outraged at what is happening to the KB families. I feel we were hoodwinked – we thought we achieved a victory in defeating the proposed premiums. We proved to the administration that we couldn’t afford the premiums only to loose all Medicaid support entirely!
My son is two and half years old with a diagnosis of Down Syndrome. I can’t explain to you what it’s like to live with that every day. Our whole life revolves around his care. I can’t explain to you properly in words what the KB Waiver and Babies Can’t Wait Program have meant to our family. I can’t explain to you what losing this coverage means to us. It means we can’t give him the help he needs to develop to his potential. I sit here crying knowing that we can’t afford to give him the help he needs without the waiver. I can’t give my little boy what he needs.
My son is relatively healthy, but he is delayed in all developmental areas. He currently receives four therapies a week: one physical therapy, one aquatherapy, two speech therapy sessions and one occupational therapy. He was receiving music therapy, but we eliminated that because it was too hard on our schedule. The waiver covered our therapies through Babies Can’t Wait since May 2004.
We are self-employed and pay for our own health insurance. Our insurance along with our co-payment and deductibles has covered most of his medical expenses, but it has not covered any of his therapy. We received rejection on our renewal for the Waiver yesterday. We do intend to appeal the decision. There is some confusion about whether our coverage will continue during the appeal. I will be working on that tomorrow.
Our denial says his condition does not meet columns B and C of the requirements. It actually detailed the fact that he can pick up Cheerios and pull to a stand as evidence that he doesn’t need the waiver! I guess that’s evidence that he’s ready to be a functional citizen!
Our therapy costs would cost us approximately $2000 per month. This is his main need.
We can not afford to pay for his therapies without the waiver. Losing the waiver would mean losing most of his therapies. There’s no way to predict how that would hinder his development. As you know birth to 5 years of age is the most critical time of development in any child. If we lose ground now, we can never regain that in the future. We can’t afford the therapy on our own, but how can we afford to not give him the help he needs at this most crucial time of his development? Losing the waiver is absolutely devastating to us and the other families with disabilities.
I don’t know much about politics, but this situation with the KB families is intolerable. Families with disabled children may not be a big enough voting block to make much of a difference, but we are not going to stand by and let our children be the defenseless victims of budget cuts. Any help you can offer to change the new administration of the program is much appreciated.
I am among the many parents faced with being denied Katie Beckett coverage that has helped to provide insurance coverages for my daughter with Friedriech's Ataxia. She was diagnosed 4 years ago and her condition with only worsen - that's the part that scares me. Her medical needs are challenging to date, the future is terrifying! Without the additional assistance from KB, how will I afford what is to come?
I do have health insurance through my employer, however, that is limited and it was such a struggle with co-payments, deductibles, and fees that weren't covered that I was drowning until I heard of KB and got relief.
Institutionalized care? I can't even imagine myself giving my child up to that care ever! Why is that the criteria? I find myself wondering if that's the set criteria for the politicians to ensure they keep medical costs lowered b/c most parents wouldn't fall to that extreme...just my opinion! These children are paying the costs for lack of KB assistance and supplemental care!! These children need our help!
On the radio today I heard part of a national call in show that was talking about the medicare and medicaid cuts. It seems that George Bush has decided to reduce the Federal Budget to the states and the states have the flexability to decide how they will administer the money they do get. Georgia is passing on the cuts to our neediest citizens by cutting people off of medicaid. One caller said that in Illinois the Governor had made health care a priority and that every child is covered. Also, Hawaii has a great health care program. Lets look at their programs and see if it will work in Georgia. He said that in Kentucky the state turned over their medicaid program to a managed care company and they could not do it for any less and their program is not working. We need to ask our Governor to make health care a priority in Georgia and if a premium is needed then make the maximum affordable to everyone. Peachcare medicaid maxes at $15.00 per month per family. Sick and disabled children should have the coverage if anyone does.
I feel like I could have written any one of these letters. Funny isn't it that if you lined any of us up along a wall we would all look differently, have different affects, outlooks but each dealing with the same pain of feeling defeated and helpless. Because its not like the money just isn't there, its it b/c other issues are chosen to be more important than our children b/c maybe the message they are sending is they are not perfect. They can not be perfect and they are not important enough to us. Hmmm. just writing that sentence kills my heart to think that my son who is 3 1/2 and has Down Syndrome is cute enough for you, mr and mrs. "representative" to say he is so affectionate....but really when it is time to vote. Are you thinking that ultimately he doesn't count? His vote will not count? His voice will not matter? He will not miss the any needed therapy he has received since he was 3 months old b/c.... well..he can sometimes aim a spoon into his mouth....BUT HE IS IN THe 2nd percentile for OT Hmmmm. And expressively at a 1 yr and 10 month leve. Yeah, thanks for saying he is affectionate it warms my heart.
12-25-05
As we celebrate the birth of our
Savior, Jesus Christ, we are thankful for many blessings. Recently, our daughter, Sarah, was
reinstated to the Katie Beckett Program. Through prayer, persistent
advocating, the help of a Senator,
an administrative assistant, a well known special needs advocate in Georgia, the GCDD, and her therapists and physicians, Sarah was reinstated. We are very thankful to DCH. However, the eligibility process has become far too complicated, tedius and burdensome to special needs families. Most of these families are hard working, tax paying people who carry heavy emotional, physical, and financial burdens caring for their special needs children. Having said this, it is
an honor and a blessing to raise and care for these special children. Literally hundreds of
children have lost health services due to the state's new eligibility requirements. These children depend on pediatric physician, hospital, medical equipment, and therapeutic services. Occupational, Speech Language Pathologists, and Physical Therapists teach our children how to sit, crawl, walk, climb, throw, eat, bathe and speak among many other functions that are critical to living. To cut these therapies,
is to cut our children's very life lines.
We are greatful that DCH has a new
Pediatric Physician on the eligibility review team. It may be
necessary for DCH to revisit hundreds of denials with the new input of this pediatric physician.
We are still concerned about the state's interpretation of the Federal Guidelines. For example, in question, is twenty four hour care verses twenty four hour supervision. We are concerned that the state requires reimbursement from special needs families if they are ultimately denied in the Fair Hearing process. Many families that actually belong in the program will not appeal for fear of losing and possibly having to repay the state. These special needs children suffer as a result. If these families could afford to repay the state, they would not initially apply for Katie Beckett.
We also ask that once DCH has determined that a child is eligible, that eligibility stick for at least three years. This will save the state considerable time, paperwork and money and lift a huge burden from special needs parents. Other states have enacted such practices.
As the GCDD stated in the newspaper article, many children are being denied that belong in the program. I have been told by
appropriations that the funds are in tact for our special needs children. I have been told by a very high profile legislator, that he supports my efforts and will do all he can for our Katie Beckett Children. If the funds are there and this legislator is willing to help along with others that are in the Legislature, we are expecting positive results for our special needs children. What is happening to our special needs children in Georgia is shameful. Georgia will only advance if our children advance, including our special needs children. We are asking our Leaders in the Legislature, Governor Perdue, and DCH to help our special needs children now.
We ask this as hard working, tax paying, voting citizens on behalf of our innocent, precious, special needs children. We appreciate the Katie Beckett Program in Georgia and look for a quick and positive response. Sincerely, Mark & Melissa Howell
Can we pass a law that says that unless all necessary programs are funded that there can be no special projects, pork barrel or other non essential programs funded by the state? Health Care is too important to be cut while funding statues and other things that are not necessary.
To whom it may concern:
As a parent of a 6 year old with autism, I am disgusted with the state and how they are handling the medicaid budget. My son requires speech pathology, occupational therapy, physical therapy, aquatic therapy and hippo therapy to ensure improved functioning each week. This does not include the therapy he receives from the school system and the hours we put in at home to hopefully improve his development.
The state granted him Katie Beckett/Medicaid Deeming Waiver privileges when he was 2+ years old. I strongly feel that if he was approved for services based on his disability almost 5 years ago, then he is still eligible for services now. The reason he continues to be eligible for medicaid services is that he will always have autism and until he reaches a level of independence, he will continue to require medical care.
He was denied medical coverage from our insurance carrier when we moved to Georgia in 2001. How do you expect us to pay for these various therapies including all of the equipment we have purchased for our home to provide carryover from the therapy he receives in the clinic and at school? The therapy sessions are on average $140/hour. He does not receive all 5 therapies mentioned during the year but he is currently receiving therapy from 3 disciplines. I am disgusted, frustrated and angry that the state wants to deny my child improved functioning and quality of life. If you take money away for his therapy now, you will pay later when he is dependent as an adult. My husband and I are parents of 3 and we cannot afford $140/hour for each therapy service he receives.
I would like to know why medicare for seniors is the primary insurer when many have private benefits from their former employers or have purchased other coverage and or have savings, homes paid for, etc.? Medicaid is always secondary if private insurance is available. Is it because Seniors have earned it and children have not?
Wow. I can't believe I found this. I thought I was alone in this battle. The application process and our ultimate denial for Katie Beckett was bewildering. My son was born with multiple congenital anomalies that fall under the name VACTERL association PLUS he is hearing impaired and has vision problems. My question is, if we have a budget surplus and we are throwing at education, why can't the Governor pass along the largess to our special children? Just remember, Gov. Perdue and State Reps, alone our voices may not be so loud but if put us all together and we are a formidable voting force.
HI i am a mother of two my oldest son has cp along with other problems he has had katie becket for about seven years.My husband and i both work and we carry health insuranceon the family ,but what they don"t cover we could not make it without katie becketthelping with meds, doctors ,therpy.There has to be something that can be done without
taking medical coverage from children with life long
disabilities.I am very concerned about the well-being of the children and their families that are being denied coverage.
A VERY CONCERNED PARENT !!!
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