Katie Beckett Medicaid Waiver Information

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Subject: Katie Beckett Waiver Presentation given at FOCUS by Heidi Moore

The material contained in this presentation is for general information only. It is not intended in any way to provide or offer legal advice. To obtain legal advice, please consult with your attorney or qualified legal representative.

Happy Reading. Sincerely, Heidi Moore-mom advocate.
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What is the Katie Beckett Waiver ?

• Category for Medicaid eligibility based on the Tax Equity & Fiscal Responsibility Act (TEFRA) 1982.
• State’s are allowed to make Medicaid available to a disabled child if:
• 18yrs old or younger, AND
• Meet federal criteria for childhood disability, AND
• Meet institutional Level of Care, AND
• Can safely be served at home, AND
• Cost does not exceed the applicable institutional cost.

What is the KB Waiver criteria based on?
Federal Regulations established general requirements in 42CFR 435.225.

Requires institutional level of care: nursing home, hospital, or intermediate care facility- mental retardation.

1. Intermediate Care Facility – Mental Retardation – 442CFR440.150 & 42CFR483.440
   • Requires 24 hour supervision AND active treatment.
2. Hospital Level of Care – 42CFR440.10
   • Georgia uses Interqual.
3. Nursing Home LOC – 42CFR440.155
   • DHR Rules 290-5-8 & OCGA 31-7-1(1)(b).
   • Requires 24 hour nursing care.

How is the Level of Care determined for the KB Waiver?
• Initial application made to DFCS.

• Clinical detail is sent to and reviewed by Georgia Medical Care Foundation.

• If Level of Care is satisfied, DFCS does cost neutrality assessment.

• Georgia Medical Care Foundation does clinical review.

• A certified Prospective Review Organization.

• Co-Medical Directors and nurse reviewers.

What is the Appeal process for KB Waiver?
• An initial administrative appeal can be requested from GMCF. You have 30 calendar days to supply additional information.
• A 2nd appeal can be made by requesting a hearing directly from the DCH. (Fair hearing in front of a judge)

Background on Katie Beckett Waiver for Georgia:
• KB Waiver was created to waive income limits of parents to establish eligibility for Medicaid in 1982.
• This is an optional Medicaid Program for Georgia.
• In 2001, the only national study ever conducted concluded that 20 states enrolled approximately 25,000 children in Medicaid through the KB waiver option. Georgia was the second highest ranked State for KB waivers.
• Increase in KB Waiver denials since May 2005. No specific disability has been targeted.
• Over 6,200 families had the KB waiver before the new guidelines were implemented on 11/15/04.
• Over 1,600 children have been denied with a projection of 48% by FY 2007.
• Over 71% of all KB Waiver families have primary healthcare insurance. Therefore, Medicaid is secondary insurance.
• KB waiver is already a cost reduction program versus the States alternative to institutional care.
• KB Waiver accounted for $33 million of the 2003 Medicaid expense. This represents less than 1% of the total Medicaid budget.
• Based on data given by DCH at the Public Hearing for KB waiver held on 1/19/06:
+GA program has had significant growth: 250% growth in 5 yrs; 2,694 FY2000, 6,299 FY2004.
+Since 6/1/05:
– 2,761 have applied to renew: 37% approved.
– 461 have applied for 1st time: 33% approved.
– 1274 have request 1st appeal: 10% approved.
– 246 have requested hearings: 67 resolved

Tips:

• Review the new eligibility criteria by going to https://dch.georgia.gov/tefra

• Fill out all forms out as a “Provider” NOT as a “Parent”.

• #1 Reason for denials is an administrative denial (lack of paperwork and incomplete package).

• Submit ALL the forms and supporting documentation in one application.

• Put together a Table and Contents and tab each document.

Networking & Building Alliances:

• Contact your State Senator, Governor and Representative’s by going to https://openstates.org and inputting your zip code. They need to hear from you about your situation and how it impacts your family.

• Stress when talking to your legislators that the majority of the KB waiver families are hardworking, middle class, tax paying, voting citizens that have never asked from anything from the State until they had a child with a disability.

• Work with the media to get the message out and to help educate the general population of our concerns.

• Get Involved! Advocating is the key to success in getting the services we need for our children. http://uniteourvoices.com

Tips for Appealing:
• In the original denial letter, the parents have 30 Calendar days to appeal.
• Resubmit any Medicaid documents that you feel you may have not filled out properly based on the new eligibility criteria.
• Prepare a 24 hour Care Plan going into detail about your child’s day. Explain everything you do as a parent that goes beyond a “typical” child’s duties as a parent.
• Have all your doctors, therapists and any other professional that works with you child submit a letter explaining why your child needs the waiver.
• Contact your local State Senator and Representative and send copies of e-mails to the Governor.

Financial Responsibility:
• The first Denial letter allows parents 30 days to provide additional information to support the level of care approval request. Whether the parents submits additional information or not, the benefits should continue until a Final Denial letter is issued.
• The Final Denial letter allows parents 30 days to request an appeal. Benefits are terminated at the end of the month, once the Final Denial letter is served. However, upon request, benefits are reopened retroactively if an appeal is requested. The benefits continue through the hearing process.
• When the appeal decision has been rendered and properly served, the benefits can be terminated at the end of the month that the hearing decision was rendered and served.
• Families could be held liable for coverage provided during the appeal process. If the family is a new applicant, they would receive no coverage during the appeal process.

Appeal Process:
• Detailed information on the procedural aspects of a fair hearing and instructional video on representing yourself in a hearing without an attorney can be found at: www.osah.ga.gov/
• If any parent feels that they have been discriminated against during the fair hearing they can report it to Chief Justice Louis Oakley or Deputy Chief Judge Michael Malihi. Contact information can be found on the above website.

List of Helpful Websites:

• An appeals decision re: 24 active care vs. 24 supervision. This is the court’s breakdown of the fed regs and how they interpreted them. http://www.state.in.us/judiciary/opinions/previous/archive/02280101.nhv.html

Current Concerns and Solutions to KB Waiver Situation:

• Consistency of review. We need to make sure that “reviewers” are not just looking at the Individual Education Plans (IEP’s) that report the child’s progress, not the delays, as well as, the child’s disability, appeal info. etc.

• Federal Regulations versus the States interpretation. It is my understanding that the State is currently exceeding the regulations for hospital, nursing home and intermediate care facility levels of care determination for eligibility. “Active treatment” definition also needs to be defined.

• Qualifications of the medical review team. Making sure all those on the review team have pediatric and clinical experience in disability related issues.

• Problems with the overall communication process and training of staff. DFACS case workers are not able to help families as they go through the process due to lack of knowledge of the system. Also having a “live” person available to help answer questions families may have during the documentation and appeal process.

• Reauthorization Process needs to be modified. The status of many children does not significantly change from year to year yet our families, doctors, nurses, therapists, etc have to fill out a stack of paperwork every year that may not be necessary. This adds time and money to the process without adding value.

• Possible Solutions for those that do not qualify for KB waiver but need support. Create an Insurance Risk Pool, Buy-in insurance program or a State fund pool to help families with costs not met by their insurance. May also want to look at a new waiver for those children that do not qualify for KB Waiver but have significant behavioral, health related and developmental delay needs. The State may also need to look at increasing the private insurance’s responsibility for standards of care for children.

• Overall: Families are asking for a clear and fair review process for their child’s KB waiver

Other Things to Know:
• Attend Disability Day at the Capitol. More info: www.gcdd.org.

• Get involved and monitor your child’s Medicaid card. www.gateway.ga.gov
– This is very important in order to verify and report problems. You can report a complaint via the website as well.Only through education, accountability and communication are we going to be able to make a difference in the process.
—
Heidi J. Moore
(Proud Mother to Jacob – 6 years old with Down syndrome & Jared – 4 years old)

“Help The Children Now, So They Can Help Themselves Later!”
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—–Original Message—–
From: Braden, Kathy
Sent: Monday, January 23, 2006 12:06 PM
Subject: FW: Contents For Katie Beckett Waiver Packet-sample of how to complete and forms checklist

Hope this helps as an example of how to document. I think they ( The Medicaid/Katie Beckett -Deeming Waiver) are requesting your PCP sign the physician signature parts of the application so start with your PCP after you have completed the forms. I haven’t yet heard of any doc refusing to sign as long as you’ve done the tough part and filled in all the history/blanks….

Good luck!
Kathy Lynn Braden, LCSW
Neurophysiology Social Worker/Children’s Epilepsy Center
Children’s Healthcare of Atlanta at Scottish Rite
kathy.braden@choa.org or 404-785-3034

—–Original Message—–
Sent: Monday, December 05, 2005 2:03 PM
Subject: Contents For Katie Beckett Waiver Packet from a mom advocate who won her appeal. Here is what to ensure you send;

1. Include your Initial Denial of Admissions with your packet. Sample is not included here.

2. Appeal letter (written by you). State who, what, when, where, why and how using names and dates where necessary.

3. Website for federal regulations followed by GA as noted in denial letter.
http://www.gpoaccess.gov/cfr/retrieve.html
Type in title, part and section, which you will find on their criteria pages.
I used [Code of Federal Regulations] [Title 42, Volume 3] [Revised as of October 1, 2004] [Page 162-164] Underline and highlight points you are making and criteria you are meeting.

4. Recommendations made by your specialist related to the 3 column changes that are know in place. You will use your child’s Psyc. Evaluation.

5. Psyc. evaluation. Sample is not included here. Highlight where necessary to guide them where to put their eyes. Cut and paste report to delete any “positives” as they can kick out your application…

6. A copy of the Draft with Changes for Nursing Facility Level of Care or NFLC– 3 column criteria sent to you by GA Health Partnership stating criteria, which needs to be met. You will highlight with yellow marker and underling criteria you are meeting. You must meet items in each column so try to meet as many as you can. (check out latest updated criteria version on the state website and download a copy; http://dch.georgia.gov/00/channel_title/0,2094,31446711_31946814,00.html. )

7. Include the original 4 page Katie Beckett Care Plan filled in, and noting, “See attached for more explanation”. You will retype this and fill out, but always include their version filled in by hand. (download blank copy from above gov website)

8. KB Parent Letter on website. Use this to meet criteria and support your care plan.

9. Use the Parent To Parent website for more help on this care plan along with my documents. http://parenttoparentofga.org/roadmap/insurance/waivers.htm

10. KB Care Plan typed out with all the supporting information. This may be 10 – 15 pages instead of the 4 page form sent to you.

11. Ped 6DMA form – check ICMR Facility . This form may have changed-download the latest version from the above website. your PCP may be the required signature NOT your specialist. This requirement may vary per County.

12. Seizure Check List – or comparable checklist you give to childcare providers, school etc….
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Georgia Health Partnership
Attention: TEFRA/Katie Beckett Review Nurse
1455 Lincoln Parkway, East
Suite 750
Atlanta, GA 30346-2200
Fax: 678.527.3001

name
address
city
September 26, 2005

To Whom This May Concern:
Please accept this letter and the following documentation as our:
Appeal to the Recent Denial of Medicaid through the TEFRA/Katie Beckett Program for our son John Doe.

Children who are not eligible for other Medicaid programs because the income or assets of their parents are too high, may be eligible for Medicaid through the Katie Beckett Program, if they meet all the following eligibility criteria:

• Child must be under 18 years old. John Doe is under 18 years of age
• Child must meet Social Security disability criteria. John Doe meets Social Security disability criteria
• Caring for child at home must be cost effective (less than nursing home cost). Caring for John Doe at home is more cost effective than caring for him in a nursing home
• Child must be ineligible for Supplemental Security Income (SSI) due to income and/or assets of the parents. John Doe is not eligible for SSI
• Child must meet the criteria for nursing home placement as established by the Georgia Medical Care Foundation (GMCF) for Medicaid recipients. John D meets the criteria for nursing home placement
• *NOTE: This does not mean the child should be placed in a nursing home, simply that he/she meets the nursing home criteria for care.
I researched the Criteria on Your Web Site for Intermediate Care Facility (ICF/MR) Level of Care.

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Name: John Doe
Date of Birth: 00/00/00
Age: 12 years, 3 months
School: Middle School

To Whom It May Concern:

John’s medical condition of Intractable Epilepsy and the functionality of his daily life skills meets the criteria for Intermediate Care Facility (ICFMR) 42 435.1009. He is a patient with related conditions with severe, chronic disability that meets all of the following conditions.

Column A

1. The individual has mental retardation:

John is Mildly Impaired to Borderline Range

2. The individual has a severe chronic disability attribute to cerebral palsy or epilepsy:

John has Intractable Epilepsy with Complex Partial Seizures

Column B
On a continuous basis, the individual requires aggressive consistent implementation of a program of specialized and generic training, treatment, health services, and related services which is directed towards:
a. The acquisition of the skills necessary for the individual to function with as much self-determination and independence as possibility:

John is in need of Occupational Therapy ______hours per week.
OT will address John’s Adaptive Skills, which are Mildly Impaired and fall in the 1st percentile. His deficits also include Functional Academics and Self Direction also in the 1st percentile.

John is in need of Speech Therapy ____days per week.
ST will benefit John in the areas of disorganized speech and struggles with reading, reading comprehension and spelling

John is in need of a School Aide 35 hours per week.
The School Aide will carry out the rest of the 24-hour supervision John needs during his school day when parents are not present.

The School Aide will work directly with John’s IEP plan including and not limited to the areas of safety.

John is in need of Adaptive P.E. in school due to his unpredictable seizure activity and safety issues.

John and his family would benefit from Respite Nursing Care due to the fact that John needs 24-hour supervision.

John would benefit from a Canine Assistant Seizure Response Dog to aide with safety issues. These Assistants have a natural ability to detect the oncoming of a seizure.

b. The prevention of further decline of the current functional status or loss of current optimal functioning:

John is in the 1st percentile of Intellectual Ability in Adaptive Functioning reflecting a significant drop from his low average performance during a 2002 evaluation.

John remains significantly dependant on caregivers for daily needs compared to same age peer while his adaptive struggles commensurate with his intellectual functioning.

The impact of John’s global difficulties is associated and cumulative, resulting in compromised day-to-day adaptive living skills.

For example during and after a seizure, John becomes John’s parents will change his pants and clothing due to incontinence or bowl loss.

The school aide will also change John’s pants incontinence or loses bowl function.

Column C
1. The service has been ordered by a physician:

Dr. X who administered the evaluation and Dr. Y who is John’s Neurologist make these recommendations

2. The service will be furnished either directly by, or under supervision of, appropriately licensed personnel:

A registered OT and ST will work with John and his ongoing needs.

John’s parents will carry out Occupational Therapy and Speech Therapy goals in the home to help John achieve and maintain goals and skills to achieve his independence and self- determination.

John’s parents will administer Diastat rectally when John’s seizures go beyond five minutes and/or do not stop following doctor’s orders and instructions.

John’s parents will make observations for difficulty or a stop in breathing patterns after administering Diastat and report conciliations to Neurologist or other Emergency Personnel following doctors orders and instructions.

John’s parents will also fully engage John’s Vagal Nerve Stimulator at onset of seizure following doctor’s orders and instructions.

John’s parents will activate the VNS a second time if his seizure does not respond to the first activation following doctor’s orders and instructions.

John’s parents will make observations for further necessary medical attention and seek orders from Neurologist and/or other Emergency Personnel following doctor’s orders and instructions.

John’s parents will supervise John taking all oral medications in order to ensure he does swallow them following doctors orders and instructions.

While John is in school, he will require an aide for complete supervision during each school day following doctor’s orders and in line with his school IEP.

The school aide will administer Diastat rectally when seizures last beyond five minutes following doctor’s orders and under instructions from the Fulton County Cluster Nurse.

The school aide will make observations for difficulty in or a stop in breathing patterns following doctor’s orders and under instructions from the Fulton County Cluster Nurse.

The school aide will also fully engage John’s Vagal Nerve Stimulator on onset of seizure following doctor’s orders and under instructions from the Fulton County Cluster Nurse.

The school aide will make observations for further necessary medical attention following doctor’s orders and under instructions from the Fulton County Cluster Nurse.

The school aide will notify parents and Emergency Personnel of all aspects of John’s seizures following doctors orders and under instructions from the Fulton County Cluster Nurse.

While John is on the school bus he will require an aide during the entire bus ride following doctors orders and under instructions from the Fulton County Cluster Nurse.

The school bus aide will administer Diastat rectally when seizures go beyond 5 minutes following doctor’s orders and under instructions from the Fulton County Cluster Nurse.

The school bus aide will make observations for difficulty in or a stop in breathing patterns following doctor’s orders and under instructions from the Fulton County Cluster Nurse.

The school bus aide will also fully engage John’s Vagal Nerve Stimulator at onset of seizure following doctor’s orders and under instructions from the Fulton County Cluster Nurse.

The school bus aide will make observations for further necessary medical attention following doctor’s orders and under instructions from the Fulton County Cluster Nurse.

The above care plan will be under the supervision and direction according to John’s neurologist, Dr. Flamini’s orders, Sally Johnson Fulton County Cluster Nurse and/or other Emergency Personnel.

3. The service is required 24 hours per day and is ordinarily furnished, as a practical matter, on an impatient basis:

All of the above recommendations will be performed 24 hours a day due to John’s impaired abilities within skilled areas of community use, home living, health and safety and self care.

If there should be any questions related to this report or the test findings, please do not hesitate to contact me at 404-785-2849.

_____________________
Dr. X

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TEFRA/Katie Beckett Care Plan For John Doe

Section A: To be Completed by Parent or Legal Representative

Personal History:

Applicant’s Name: John DOB: 00/00/00 Applicant’s Age 00 years old

Applicant’s Address: 123 Main Street

Applicant’s Telephone number: 678-555-1212

City: Alpharetta State: GA Zip Code: 30004 County: Fulton County

Social Security #: 555-55-555

Medicaid I.D.# 555555555555

Applicant’s Family History

Mother’s name: Momma Doe Father’s name: Pappa Doe

Educational level: BA Father’s Educational level: BA

Does Primary Caregiver work? Yes No Primary Caregiver’s work schedule: Hours: 0

Does Secondary Caregiver work? Yes No Secondary Caregiver’s work schedule: Hours: 7am-5pm

Other Siblings: Brother Doe

School Services/Education

Is Child In School? Yes 􀀀 No # of hours per day in school: 6.5 # of days per week in school: 5

Does the child have a: IFSP or an IEP ? Yes No

IFSP Current? Yes No

IEP Current? Yes No

If yes, (submit with application)

Level of Care in School

Skilled Nursing: 35 hours per week

Un-skilled Nursing : 30 hours per week

Therapies In School

Speech Therapy 1.5 hours per week

Occupational Therapy .5 hours per week

Other Health Impairment 30 hours per week

Adaptive P.E. Services 5 hours per week

Medical Information – the Physician must complete This Section

Primary Care Physician(s)Name: PCP – Dr. X,

Primary Care Physician(s) Telephone Number: 770-555-1212

Specialty Physicians: Child Neurology, Dr. Y

Specialty Physicians Telephone Number: 404-555-1212

Specialty Physicians: Eye Ear Nose & Throat, Dr. Z

Specialty Physicians Telephone Number: 770-555-5551

Specialty Physicians: Childrens Health Care of Atlanta, Dr. A

Specialty Physicians Telephone Number: 404-555-5555

Applicant’s detailed medical history.
(Medical records or Transfer Record Attached). Working on this

Medications

John has maxed out on the following medications

Depakote Dilantin Klonopin Tegretol
Topamax Tranxene Trileptal

John is currently taking the following medications:

Medication: Lamictal Frequency: 300 mg morning/300 mg night Route: Oral

Side effects: double vision (diplopia), drowsiness, dizziness, ataxia, headache, nausea and vomiting and rash

Medication: Keppra Frequency: 1500 mg morning/2000 mg night Route: Oral

Side effects: sleepiness, unsteadiness, infection, behavior disturbance and dizziness

Medication: Dylantin Frequency: 150 mg night Route: Oral

Side effects: difficulty in concentration, slow motor speed, unsteadiness, double vision, nausea and drowsiness may occur, gum overgrowth, excessive hairiness & thickening of facial features

Medication: Diastat Frequency: As Needed Route: Rectal

Side effects difficulty or lack of breathing

Medication: Adivan Frequency: As Needed Route: Oral

Side effects: an allergic reaction (difficulty breathing; closing of the throat; swelling of the lips, face, or tongue; or hives sores in the mouth or throat, yellowing of the skin or eyes, a rash, hallucinations or severe confusion, changes in vision, drowsiness, dizziness, or clumsiness, depression, nausea, vomiting, diarrhea, or constipation and changes in behavior

Currently The Only Medical Options Left for John At This Time

Felbatol: SERIUOS SIDE EFFECTS related to the bone marrow and liver, you may be asked by your physician to sign a consent form to take Felbatol. There have been cases of LIVER FAILURE

Implants

John has a Vagel Nerve Stimulator (VNS) Inplanted in his chest:

The VNS is a device about the size of a hockey puck, which is placed in the chest in a manner similar to a pacemaker for the heart.
The surgeon then wraps its lead wires around the vagus nerve.
The vagus nerve is unique among peripheral nerves of the body in that its nuclei begin in the brainstem (the lower part of the brain) but its peripheral nerve traverses a large portion of the body (neck, chest, and part of the abdomen).
Once implanted, the neurologist will program the VNS to deliver a series of stimulations to the vagus nerve at various strengths and frequencies
The VNS does not work by sensing a seizure.
Instead it works by repetitively stimulating the vagus nerve for a period of time and then by pausing for a period time.
How this achieves an anti-epileptic effect is unknown but the best explanation this author has heard of is that the device clearly scrambles some of the synchronous discharges of the brain.
Since seizures are synchronous discharges of groups of neurons in the brain, then scrambling them periodically may serve to prevent the recruitment phase needed to begin a clinically recognizable seizure.
The VNS is also programmed with a special sequence that is activated when a magnet is swept over the device.
For patients who can sense a seizure is about to start (the aura of a seizure), it can be useful in aborting the seizure.
For patients who cannot sense the impending seizure, it can be useful for family and caretakers to shorten the seizure and allow for faster recovery of the patient.

Medical Information

Problem Treatment Plan
Intractable Epilepsy See attached under Treatment Plan
Developmental Delays See attached under Treatment Plan and IEP

Daily Functioning 24 Hr. Care Plan including Treatment Plan for Problems

The goal of John Care Plan is to follow all orders as given by John’s Neurologists and Primary Care Physician.

This Care Plan includes and is not limited to protecting John, keeping him safe, following Seizure Protocol, Administering Oral Medications, Administering Rectal Medication, Activating the Vagel Nerve Stimulator, Assisting John in his Daily Functioning Life Skills including changing his clothes in the event of Elimination and Incontinence as well as observing unusual breathing patterns or lack of breathing. John’s mother will also observe and make notes to report to John’s Doctors acting as a liaison in aiding in his Care Plan.

Currently the greatest challenge in living with Epilepsy is trying to stay safe.
Epilepsy is a horrible disorder. It is even a life threatening disorder. Sometimes called a seizure disorder, epilepsy is a chronic medical condition produced by temporary changes in the electrical function of the brain, causing seizures which affect awareness, movement, or sensation.

School Days

At Home Before School
1. Wake John 45 minutes prior to front door bus pick up
2. Remind John to take a shower
3. Test water temperature before John get’s in shower
4. Observe John during shower, allowing privacy, watching and listening for sudden Seizures or John falling in shower
5. Remind John to wash his entire boy including washing his hair, under arms and privates
6. Instruct John to where his towel is and to dry off
7. Check body and hair to be certain they are thoroughly washed and all soap is out of hair and rinsed off body
8. Remind John to use deodorant, brush teeth and gargle
9. Remind John where he laid his clothes out the night before in order to get dressed
10. Observe John taking all oral medicine
11. Prepare breakfast for John and remind him to eat
12. Encourage John to get his book bag
13. Remind John it is time to put his shoes on
14. Throughout his morning routine, if John goes into his bedroom, make certain he has not turned television on and is laying on bed under covers
15. Throughout his morning routine, encourage John to watch clock so he is aware of the time
16. Around 7:30 ask John to make final check that he is ready for school
17. Have John look out garage door for bus approaching driveway
18. Take John’s’ wheel chair to the bus driver
19. If John has a Seizure, mother will get John to a safe place whether that be the floor or bed
20. Mother will remove all objects and clear John of anything which can injury him during a Seizure
21. If John is in the shower, mother will attempt to safely get him our of the water
22. Mother will immediately use magnet to turn on John’s Vagel Nerve Stimulator by swiping John’s upper left chest over battery site which was surgically implanted under skin
23. Mom will time John’s Seizure and take notes to brief neurologist at a later time
24. Notes will include duration of Seizure, what John was doing prior to Seizure, all movements and reactions John has during Seizure including drooling, gurgling, bowl elimination or any incontinence, shaking, crying, eye movement, breathing, shallow breathing, lack of breathing, lips and skin turning blue etc…and any other pertinent information which will be beneficial in determining type of Seizure
25. If VNS stops John’s Seizure in under 5 minutes, John will be allowed to rest
26. Until John can move himself, mother will have to observe John where he lies due to his weight of 114 lbs and 5’3inches, and her inability to pick him up by herself
27. If VNS does not stop John’s Seizure in 5 minutes, mother will swipe John’s chest again with magnet
28. Mother will Administer Diastat rectally if Seizure continues
29. Mother will observe John for shallow breathing to alert Emergency Personnel for need of Oxygen
30. When Emergency Personnel arrive, they will work with mother to assess if John needs to go to Emergency Room
31. Emergency Personnel will administer oxygen
32. Either John will be transported to Emergency Room or if Seizure stops mother may decide to take responsibility of watching John at home
33. Mother will prepare hard copy of all events leading up to and during John’s Seizure including care taking during Seizure for neurologist
34. Mother will alert Bus transportation John will not be on the school bus that morning
35. John will be allowed to rest until he is able to wake up and move on his own
36. At that time, mother will take John to school as she deems he can go and be productive
37. If John has another Seizure mother will follow above routine of activating VNS, taking notes and calling Emergency Personnel
38. If John has several or more short Seizures during the day and can not go, mother will activate VNS each time and Administer Diastat rectally following all protocol for observation of shallow breathing or lack of breathing
39. If John has Seizures longer than 5 minutes after several shorter Seizures, mother will Administer Diastat rectally
40. Mother will contact neurologist for further orders to follow

During School Hours – Bus Ride To and From School

1. On the drive to school John is to be under complete supervision of Bus Driver and Bus Aide until he reaches school doors and is taken off school bus by his school Aide
2. During bus ride, Bus Aide must observe any reaction or behavior leading to a Seizure
3. Bus temperature must not be too cold nor too hot preventing possible body temperature changes that are too hot or too cold which could lead to Seizure
4. On the drive home Bus Driver and Aide must have John under complete supervision until he reaches his home and is taken off school bus
5. Bus Driver will display protocol for John’s Seizures in obvious place on bus and have access to magnet which will activate on John’s Vagel Nerve Stimulator
6. Bus Driver will take John’s wheel chair off the bus
7. If John has a Seizure on the bus, Bus Aide will alert Bus Driver to pull bus over
8. Bus Driver will call Emergency Personnel
9. Bus Aide will get John to a safe place
10. Bus Aide will remove all objects and clear John of anything which can injury him during a Seizure
11. Bus Aide will immediately use magnet to turn on John’s Vagel Nerve Stimulator by swiping John’s upper left chest over battery site which was surgically implanted under skin
12. As Bus Aide attends John, Bus Driver will take control of other children keeping all others away from John as he is seizing
13. Bus Aide will time John’s Seizure and take notes to brief mother and Emergency Personnel of Seizure activity
14. Notes will include duration of Seizure, what John was doing prior to Seizure, all movements and reactions John has during Seizure including drooling, gurgling, bowl elimination or any incontinence, shaking, crying, eye movement, breathing, shallow breathing, lack of breathing, lips and skin turning blue etc…and any other pertinent information which will be beneficial in determining type of Seizure John is having for John’ mother to dictate to neurologist
15. Bus Driver will call John’s mother to report detailed information
16. If VNS does not stop John’s Seizure in 5 minutes, Bus Aide will swipe John’s chest again with magnet
17. Providing privacy, Bus Aide will Administer Diastat rectally
18. Bus Aide will observe John for shallow breathing to alert Emergency Personnel for need of Oxygen
19. When Emergency Personnel arrive, they will take access situation and make all decisions verses life or death including Administering Oxygen
20. John’s mother will accompany or meet Emergency Personnel to hospital Emergency Room where further treatment will be decided
21. Bus Aide will send hard copy of all events leading up to and during John’s Seizure including care taking during Seizure to mother

During School Hours

1. School Aide will take John and his wheel chair to all classes throughout school day including P.E. and lunch
2. John will have a male School Aide accompany him into the bathroom
3. School Aide will observe John for any reaction or behavior leading to a Seizure
4. Magnets utilized to turn on John’s Vagel Nerve Stimulator (VNS) have been placed in all John’s classroom ahead of time and are in School Aides bag at all times
5. School Aide will follow John’s I.E.P. throughout the school day as planned by School Administrators and mother
6. School Aide will take John and wheel chair to school bus at the end of the school day
7. If John has a Seizure, school Aide will call for help for nearest school administrator
8. School Aide will get John to a safe place whether that be the floor, a school cot or John’s wheel chair
9. School Administrator will remove all objects and clear John of anything which can injury him during a Seizure
10. School Aide will immediately use magnet to turn on John’s Vagel Nerve Stimulator by swiping John’s upper left chest over battery site which was surgically implanted under skin
11. As School Aide attends John, School Administrator will take control of other children keeping all others away from John as he is seizing
12. With the help of another School Administrator, School Aide will time John’s Seizure and take notes to brief mother of Seizure activity
13. Notes will include duration of Seizure, what John was doing prior to Seizure, all movements and reactions John has during Seizure including drooling, gurgling, eliminating or any incontinence, shaking, crying, eye movement, breathing, shallow breathing, lack of breathing, lips and skin turning blue etc…and any other pertinent information which will be beneficial in determining type of Seizure John is having for John’ mother to dictate to neurologist
14. If VNS stops John’s Seizure in under 5 minutes, John will be taken by wheel chair to clinic to rest
15. School Aide will change John’s clothes if he has bowl elimination or has been incontinent
16. School Administrator will call John’s mother to report detailed information and send information home by hard copy
17. If John is able to wake on his own and return to class he will be allowed to as time warrants
18. If John has several short Seizures throughout the day, but does not warrant a trip to the Emergency Room, mother will pick John up to take him home
19. If John has a Seizure 1 hour before the bus is due to arrive, mother will pick John up from school
20. If VNS does not stop John’s Seizure in 5 minutes, School Aside will swipe John’s chest again with magnet activating VNS
21. School Administrator will call John’s mother to report detailed information alerting her the plan to call Emergency Personnel
22. Providing privacy, School Aide will Administer Diastat rectally
23. Emergency Personnel will be called to take John to the Emergency Room
24. School Aide will observe John for shallow breathing, lack of breathing or lips turning blue to alert Emergency Personnel for need of Oxygen
25. When Emergency Personnel arrive, they will access over situation and make all decisions verses life or death
26. John’s mother will accompany or meet Emergency Personnel to hospital Emergency Room where further treatment will be decided
27. School Aide will send hard copy of all events leading up to and during John’s Seizure including care taking during Seizure

If John Is Picked Up During School Hours And Taken Home By Mother

1. Mother will observe John during car ride home for any Seizure activity
2. If John has a Seizure, mother will pull over to safest place on side of road
3. Mother will loosen safety harness so John does not injure himself
4. Mother will swipe John’s VNS with a magnet
5. She will time Seizure and make notes about type and timing of seizure
6. Mother will take John home as soon as she observes he has stopped Seizure activity and it is safe to drive
7. She will attempt to wake John after Seizure has stopped to take him in the home and lie him on a couch or bed whichever is closest
8. If John is unable to wake and move, mother will wait until John can wake and move
9. At home mother will follow same Seizure precautions as outlined above
10. If John has several or more short Seizures in a row, she will Administer Diastat rectally
11. If John has a Seizure longer than 5 minutes, she will Administer Diastat rectally
12. Mother will notify neurologist of all activity and care taken up to this point asking for further direction
13. Mother will follow doctors orders and instructions to make Medicine Changes or to go to Emergency Room

After School

1. Meet John off the school bus at home driveway
2. Direct John where to put his shoes and coat
3. Give John after school snack and direct him to eat it
4. Ask John to get his book bag and take our all notes and home work
5. Read all notes to John
6. Read all homework directions to John
7. Help John do all homework guiding him to attempt to answer all questions or work on school projects
8. Ask John to put all homework back in book bag and place at back door
9. John can participate in outdoor activity i.e. riding bike, going to park etc…with complete Adult Supervision provided he has not had any seizure activity that day

In The Evening At Home

1. Mother will prepare diner for John and direct him to eat it.
2. If John has had a seizure earlier in the day, mother will spoon feed John if he can swallow
3. John can play in his room and watch television with supervision
4. Mother will Observe John take all Oral Medicine
5. She will remind John to lay his clothes out for next day
6. She will remind John to use deodorant, brush teeth and gargle
7. She will remind John to put on his pajamas

At Bedtime And Into The Morning Hours
1. She will remind John to lay his clothes out for next day
2. She will remind John to use deodorant, brush teeth and gargle
3. She will remind John to put on his pajamas
4. John will sleep in the same room with his mother so she can observe him all night
5. She will listen for a change in breathing patters, gurgling, feel the bed shaking, feel the bed for incontinence or bowel elimination throughout the night

During Holidays When John Is Off School and During Summer Break

Mother will follow all Care Plan as outlined above including:

1. Wake John every morning
2. Remind John to take a shower
3. Test water temperature before John gets in shower
4. Observe John during shower, allowing privacy, watching and listening for sudden Seizures or John falling in shower
5. Remind John to wash his entire boy including washing his hair, under arms and privates
6. Instruct John to where his towel is and to dry off
7. Check body and hair to be certain they are thoroughly washed and all soap is out of hair and rinsed off body
8. Remind John to use deodorant, brush teeth and gargle
9. Remind John where he laid his clothes out the night before in order to get dressed
10. Observe John taking all oral medicine
11. Prepare breakfast for John and remind him to eat
12. John will be allowed daily activities to his capabilities under Complete Supervision
13. John can have no physical contact sports, no play involving extreme temperatures, he can not be in the pool unless an adult is nearby in the pool, he can not ride his bike without an adult, he can not cross the street without supervision, he can not play outside without supervision, he can not cook food without supervision
14. Mother will prepare lunch and diner for John and direct him to eat it
15. If John has had a seizure, mother will spoon feed John if he can swallow
16. John can play in his room and watch television with supervision
17. Mother will Observe John take all Oral Medicine
18. She will remind John to lay his clothes out for next day
19. She will remind John to use deodorant, brush teeth and gargle
20. She will remind John to put on his pajamas
21. John will sleep in the same room with his mother so she can observe him all night
22. She will listen for a change in breathing patters, gurgling, feel the bed shaking, feel the bed for incontinence or bowel elimination throughout the night
23. If John has a Seizure during the day, mother will get John to a safe place whether that be the floor or bed
24. Mother will remove all objects and clear John of anything which can injury him during a Seizure
25. If John is in the shower, mother will attempt to safely get him our of the water
26. Mother will immediately use magnet to turn on John’s Vagel Nerve Stimulator by swiping John’s upper left chest over battery site which was surgically implanted under skin
27. Mom will time John’s Seizure and take notes to brief neurologist at a later time
28. Notes will include duration of Seizure, what John was doing prior to Seizure, all movements and reactions John has during Seizure including drooling, gurgling, eliminating or any incontinence, shaking, crying, eye movement, breathing, shallow breathing, lack of breathing, lips and skin turning blue etc…and any other pertinent information which will be beneficial in determining type of Seizure
29. If VNS stops John’s Seizure in under 5 minutes, John will be allowed to rest
30. Until John can move himself, mother will have to observe John where he lies due to his weight and her inability to pick him up by herself
31. If VNS does not stop John’s Seizure in 5 minutes, mother will swipe John’s chest again with magnet
32. Mother will Administer Diastat rectally if Seizure continues
33. Mother will observe John for shallow breathing to alert Emergency Personnel for need of Oxygen
34. When Emergency Personnel arrive, they will work with mother to assess if John needs to go to Emergency Room
35. Emergency Personnel will administer oxygen
36. Either John will be transported to Emergency Room or if Seizure stops mother may decide to take responsibility of watching John at home
37. Mother will prepare hard copy of all events leading up to and during John’s Seizure including care taking during Seizure for neurologist
38. During the day, John will be allowed to rest until he is able to wake up and move on his own
39. During the bed time hours, John will remain in bed until the morning or he will be moved as deemed necessary by Emergency Personnel
40. If John has another Seizure mother will follow above routine of activating VNS, taking notes and calling Emergency Personnel
41. If John has several or more short Seizures during the day, mother will activate VNS each time and Administer Diastat rectally and following all protocol for observation of shallow breathing
42. If John has Seizures longer than 5 minutes after several shorter Seizures, mother will Administer Diastat rectally
43. If John enters into his second day of having Seizures, mother will contact neurologist for further orders to follow

Hospital Stays

January 2001 3 weeks New York University
April 2001 1 week New York University
2002 Scottish Rite Hospital
November 2003 Scottish Rite Hospital Vagel Nerve Stimulator Implant
March 2005 Scottish Rite Hospital 1 week
July 2005 Scottish Rite Hospital 2 weeks

Respiratory Care: N/A Pulse Oximetry: N/A CPT: N/A

Trach Care: N/A Suctioning/Frequency: N/A

Is Recipient on O2? No Yes, if so: % Hours per Day

Ventilator During the Day # of Hours: 0 During the Night # of Hours: 0
C-PAP or BI-PAP N/A Hours N/A (Please state) Day or Night

Nutritional Therapy

Nutrition(s): N/A Oral/G-Tube/J-tube: N/A

Frequency: I.V. and/or TPN Information: N/A

Precautions: N/A

Equipment

None________Wheelchair: X Walking Devices__________Splints _________Other_________

Wheelchair utilized by caregiver to move John to safety after he has had a seizure.
Also used to move John when he is unable too walk due to exhaustion after multiple seizures.

Current Functional Status

Patient has Intractable Epilepsy with cluster seizures daily, which are not under control.

His seizures come in no regular pattern and have in fact become worse over the past year.

Medications and the VNS therapy have not provided optimal results.

These seizures come in the form of:

Grand Mal
• sudden cry from lungs
• muscle jerks
• shallow breathing or temporary suspended breathing
• bluish skin
• possible loss of bladder control
• lasts a couple minutes
• normal breathing starts again
• some confusion and fatigue

Petit Mal
• a blank stare beginning and ending abruptly lasting only a few seconds
• rapid blinking
• chewing motion of the mouth

Simple Partial
• jerking in one area of body that can’t be stopped
• jerking may move to another part of body
• may hear or see things that are not there
• may have unexplained sadness, anger or joy
• may have nausea
• may smell something funny or feel funny

John may also experience before, during and after seizure
• short attention blackouts that look like daydreaming
• sudden falls for no reason
• lack of response for brief periods or dazed behavior
• unusual sleepiness and irritability from wakening
• head nodding
• rapid blinking
• complaining things look, sound or feel funny
• stomach pain followed by moments of confusion
• repeated unnatural movements
• a blank stare with chewing, mumbling, random movements
• sudden fear or anger
• muscle jerks
• memory gaps
• fever

John is unable to walk, talk or move after seizures and up to 2 hours there after.

He needs post seizure recovery time after every seizure.

His cognitive loss after seizures is more than occasional forgetfulness.

He needs Self Help with (eating, bathing, dressing, toileting, grooming) after seizures.

There is a significant lack of Motor Skills (using hands, sitting, walking, climbing, etc.) after seizures.

There is a significant loss in Social Skills (recognizing people) after seizures.

John will be completely dependent on caretaker, needing total assistance after seizures.

When he is not in a cluster of seizures he will still need supervision in many of the above areas.

As John grows, the gap will further widened between himself and children of his own age in all of the above areas if his seizures do not get controlled.

Therapies required

It is recommended John receive occupational therapy on a regular basis.

• express his/her wants and needs
• functional academics
• self direction
• safety

It is recommended John receive speech therapy on a regular basis.

• increase vocabulary
• develop language concepts
• follow simple verbal directions
• organized speech
• help with reading and reading comprehension
• help with spelling

It is recommended John would benefit from a Canine Assistant Seizure Response Dog

• to aide with safety issues
• they have the natural ability to detect the oncoming of a seizure

Physician’s order must accompany therapies.

Physician’s goals and recommendations

It is recommended that John require monitoring and overall management of medical conditions under the direction of a licensed physician and/or neurologist.

It is recommended that John needs blood levels done every three months or more as deemed necessary to make sure his anticonvulsant medications are within therapeutic range.

It will be especially important to monitor him seizure activity as he reaches puberty because of growth spurts and hormonal changes.

His VNS must be checked every six weeks for monitoring, updating and checking life of battery implanted in his chest.

It is recommended that John will have yearly CT Scans, MRI and EEG to access any changes in John’s condition.

It is recommended that John should be encouraged to do as much as possible of each task when he is able to.

John needs to be free from dangers.

In light that John is not able to care for himself, it is recommended that John have adult supervision 24 hours a day to keep him safe.

John’s parents need a break from the 24-hour responsibility of caring for him.

It is recommended that John’s parents have respite care on a monthly basis so that they can do things with their other son and have some time alone.

Physician’s Letter of Medical Necessity

It is recommended that the Katie Beckett Waiver be granted to provide John with Medicaid coverage.

John needs TEFRA/Katie Beckett in order to help his family cover the enormous medical costs needed to assist them in caring for John in daily living activities medical and therapy expenses.

Without it, his parents would not be able to care for him in their home and he would need to live in nursing facility.

See attached recommendations

_______________________________________________
Parent or Legal Representative Signature/Primary
Date

_______________________________________________
Physician Signature/Primary
Date

_______________________________________________
Parent or Legal Representative Signature (Secondary)
Date

_______________________________________________
Social Worker or /DFCS Foster Care Worker
Date

This document requires at least two signatures, the Primary Care Physician or Physician of record and Parent or Legal Representative (Caregiver’s Signature).
** Foster care applicants must have the signature of the DFCS Representative.

====================================================
SEIZURE CHECKLIST FOR JOHN DOE
WHAT TO DO
• lie John Doe on his side
• place something soft under his head
• loosen any clothing that may be tight
• do not restrain him
• move sharp objects out of his way
• Time the seizure
WHEN TO CALL 911
• when seizure lasts more than 5 minutes
• when one seizure follows another
• if breathing does not return
• when there are injuries or seizure happened in the water

Mom – 678.555-5555
1234 Main Street
Neurologist Dr. Y 404.555-5555
====================================================

Subject: FW: Katie Beckett Waiver Update on Denials and What to Do! – more info

More important info on Katie Becket denials and how to appeal. If you get a denial-please also let the HElp( Health Law Partnership) at 404-785-2005 or www.healthlawpartnership.org as they are gathering info for possible legal action. This is a law group in partnership with Children’s Healthcare of Atlanta.

Kathy Lynn Braden, LCSW
Neurophysiology Social Worker
Children’s Epilepsy Center
404-785-3034 phone

====================================================

—–Original Message—–
Sent: Thursday, October 13, 2005 7:54 PM
Subject: Katie Beckett Waiver Update on Denials and What to Do!

Dearest Advocates:
Here is a revised understanding of what some of the issues are regarding the Katie Beckett Waiver at this time and helpful hints. Based on the limited number of families I have been in contact with over the last few months, there has been a huge increase in Katie Beckett Waiver denials in Georgia!….. Hopefully, the below information will be helpful. Sincerely, Heidi

I’m aware that there are a lot of questions regarding the KB Waiver as more and more families are being denied……………..I’ve compiled the below information in hopes to answer some of your questions. This information is based on my discussion with advocates, DCH, providers, legislators and families. As always, I must state that I’m only a parent that happens to be an advocate for our children, NOT an expert.

1. There has been an increase in KB Waiver denials since May 2005: No specific disability has been targeted. (All KB applications dated 11/15/04 or later are following new guidelines).

2. You can review the new eligibility guidelines for the KB waiver on the web. Go to the website below, click on “Medicaid”, then click on “New Information on TEFRA/Katie Beckett & Required Forms”. This is where you will find letters from DCH, the New DMA-6A form, instructions, Level of Care Criteria (this means new eligibility requirements), the Care Plan and Instructions.

3. All applications after 11/15/04 have the following new forms:
a. Pediatric DMA6(A).
b. Care Plan (DMA706).
c. Cost-Effectiveness Form (DMA 704- which replaced the Deeming Waiver Physicians Referral Form).

4. Fill all the forms out as a “Provider” NOT as a “parent”.

5. DCH is currently reviewing applications that were submitted April 2005.

6. Please submit ALL the forms in your application together in one package if possible.

7. If you are denied, you should contact the Governor’s Council on Dev. Disabilities (GCDD) so they can keep track of those denials and hopefully they will be able to work with DCH and force an answer to the situation.

8. ALWAYS send everything by certified mail /returned receipt so you have a record of them receiving it and appeal their decision.

9. If a family is denied the KB waiver (in the renewal process) and receives the certified letter stating so; the child will stay on Medicaid during the appeal process BUT if the department prevails the family could be liable for the coverage provided during the appeal process. If the family is a new applicant, they would receive no coverage during the appeal process.

10. Regarding Form DMA-6A, question #7 “Does guardian think the applicant should be institutionalized? Yes or No” . As you can imagine there has been a lot of confusion with this question. As a parent, I would do everything to avoid institutionalizing my son, but the waiver is based on institutional care. The purpose of the waiver is to allow children not to be institutionalized and be at home with their parents (giving the right support and cost effectiveness, etc). As you can see this is very confusing just writing it on paper….The answer I received from DCH is as follows:

“The DMA-6A form is NOT just used for KB waiver but for ALL pediatric children for TEFRA, Nursing Home and GAPP eligible. It is the right of any parent to care for their child at home however, there are a FEW parents who choose institutionalization as a viable option based on their family and individual needs…..”

Therefore, you should answer the question like this “If you did not have the KB waiver, would you institutilize your child? Yes or No. My recommendation is that which ever way you respond…write a note clarifying your decision right there on the form!

11. Tips for Appeals:

a. Resubmit any Medicaid documents that you feel you may have not filled out properly based on the new eligibility guidelines.

b. Prepare a 24 hour Care Plan going into detail about your child’s day from the time they get up from bed to the time they go to sleep. Explain everything you do as a parent that goes beyond a “typical” child duties as a parent.

c. Have all your doctors, therapists and any other professional that works with your child submit a letter explaining why your child needs the waiver.

====================================================

From: <heidijmoore@comcast.net>
Date: December 9, 2005 11:15:20 AM EST
To: <heidijmoore@comcast.net>
Subject: Katie Beckett Waiver History

Dearest Advocates:

A few weeks ago, Kathleen Kearney, got in contact with me regarding the Katie Beckett Waiver program in the State of Georgia. Kathleen is a graduate nursing student at Emory University, as well as, has a law degree from another State. As part of her graduate program, she is researching the history, as well as, helping me with putting together tips for parents going through the Administrative Hearing process due to the issues we face with the Katie Beckett Waiver program currently. She recently prepared the below document giving history to the Katie Beckett Waiver.

Parents: I want to stress this…..Many of you don’t know….The Katie Beckett Waiver is an OPTIONAL Medicaid program in our State. We are very lucky to have it. We just need to help the State in giving our families a “fair” review of our applications and streamline the overall process.

Thanks again to Kathleen for all her help now and in the future. There are also a lot of great resource links attached as well for your reading pleasure! Hope this information helps during these difficult times we face as parents of special needs children. Sincerely, Heidi

The History of the “Katie Beckett Waiver”
Kathleen Kearney, RN, BSN, JD

At 6 months of age, Katie Beckett contracted viral encephalitis, had a tracheostomy tube inserted into her throat, and spent three years in an Iowa pediatric intensive care unit.[1] According to her mother, Julie Beckett, “it became increasingly clear Katie could just as easily and effectively receive care at home as she could at the hospital. But federal law stated that she would lose her Medicaid eligibility if she wasn’t in a hospital or institution.”[2]

In late 1981, with the help of President Ronald Reagan, Katie Beckett was granted a special waiver so her parents’ income was not deemed (counted) for purposes of her Medicaid eligibility.[3] At a November 10, 1981, news conference, President Reagan used Katie “as an example of someone who had been kept hospitalized because of bureaucratic paper work…”[4] On November 12, 1981, Richard Schweiker, the Secretary of Health and Human Services, waived the Medicaid eligibility rules “to let Katie return home without loss of Federal welfare.”[5]

Katie Beckett was not the recipient of the first “Katie Beckett” deeming waiver because the option did not exist in 1981. John Trollinger, a spokesperson for Social Security Administration in January 1982, stated “when asked if there have been other waivers of the rules in cases similar to Katie’s:‘[t]hat decision applied to her only, and there have been no other exceptions made.’”[6] At that time, Katie’s health care costs were approximately $12,000 to $15,000 per year, and when she returned home, the costs decreased to approximately $2,000 to $3,000 per year.[7]

Julie Beckett worked with Representative Tom Tauke to create a policy that would waive income limits to establish Medicaid eligibility.[8] Julie Beckett has stated that policymakers “often don’t understand that circumstances in health care financing have changed so dramatically that it affects even those families who make above 600 percent of the federal poverty level.”[9]

The “Katie Beckett” Medicaid Eligibility Option appeared in the Tax Equity and Fiscal Responsibility Act of 1982.[10] Even today, states are not required to participate. However, if a state chooses to offer the “Katie Beckett” waiver, it must submit an application for approval to the Centers for Medicare and Medicaid.

In 1986, Robert Wren of the Health Care Financing Administration reported that only 12 states were utilizing the option waiver.[11] In 1988, the congressional Task Force on Technology-Dependent Children estimated that “fewer than 400 are being cared for at home under the Medicaid waivers now allowed.”[12]

In 2001, the only national study ever conducted concluded that 20 states enrolled approximately 25,000 children in Medicaid through the Katie Beckett option.[13] At that time, Wisconsin had the highest number of enrollees (4,300) and Georgia was the second highest ranked state by awarding Katie Becket waivers to 4,086 children.[14] Arkansas, Georgia, Minnesota, South Carolina, and Wisconsin had the largest number of enrollees, which accounted for 70% of all children with Katie Beckett waivers in the entire country.[15]

Now, Katie Beckett is twenty-seven years old and a productive member of our society. Growing up, she was never enrolled in special education classes.[16] Ms. Beckett still has a tracheostomy and needs to be connected to a ventilator at night. She graduated from Mount Mercy College with a bachelors degree in English.[17]
</heidijmoore@comcast.net></heidijmoore@comcast.net>

[1] Beckett, K. (n.d). Proud of my disability. Retrieved December 8, 2005, from http://www.fvkasa.org/reports/proud.html
Kelly, C. (n.d.). The power of advocacy: a conversation with Julie Beckett. Retrieved October 19, 2005, from http://www.childrenshospitals.net/Template.cfm?Section=Home&CONTENTID=4889&TEMPLATE=/ContentManagement/ContentDisplay.cfm
[2] Kelly, C. (n.d.). The power of advocacy: a conversation with Julie Beckett. Retrieved October 19, 2005, from http://www.childrenshospitals.net/Template.cfm?Section=Home&CONTENTID=4889&TEMPLATE=/ContentManagement/ContentDisplay.cfm
[3] Associated Press. (1986, December 7). Home care for chronically ill children examined. The New York Times. Retrived November 8, 2005, from http://query.nytimes.com/gst/health/article-page.html?res=9A0DE2DC163DF934A35751C1A960948260
[4] Krebs, A. & Thomas, R.M. (1981, December 2). Notes on People; Eased Rule Means Homecoming for Patient, 3. The New York Times. Retrieved December 8, 2005, from http://query.nytimes.com/gst/health/article-page.html?res=9B03E7D91738F930A35751C1A967948260
[5] Haitch, R. (1982, January 31). Follow-up on the news; waiver for Katie. The New York Times. Retrieved November 8, 2005, from http://query.nytimes.com/gst/health/article-page.html?res=990DE4DF1038F932A05752C0A964948260
[6] Haitch, R. (1982, January 31). Follow-up on the news; waiver for Katie. The New York Times. Retrieved November 8, 2005, from http://query.nytimes.com/gst/health/article-page.html?res=990DE4DF1038F932A05752C0A964948260
[7] Associated Press. (1986, December 7). Home care for chronically ill children examined. The New York Times. Retrieved November 8, 2005, from http://query.nytimes.com/gst/health/article-page.html?res=9A0DE2DC163DF934A35751C1A960948260
Associated Press. (1988, April 21). Help sought for children kept alive by machines. The New York Times. Retrieved October 19, 2005, from http://query.nytimes.com/gst/health/article-page.html?res=940DEFD6173EF932A15757C0A96E948260
[8] Kelly, C. (n.d.). The power of advocacy: a conversation with Julie Beckett. Retrieved October 19, 2005, from http://www.childrenshospitals.net/Template.cfm?Section=Home&CONTENTID=4889&TEMPLATE=/ContentManagement/ContentDisplay.cfm
[9] Kelly, C. (n.d.). The power of advocacy: a conversation with Julie Beckett. Retrieved October 19, 2005, from http://www.childrenshospitals.net/Template.cfm?Section=Home&CONTENTID=4889&TEMPLATE=/ContentManagement/ContentDisplay.cfm
[10] Semansky, R. M., & Koyanagi, C. (2004). The TEFRA Medicaid eligibility option for children with severe disabilities: a national study. The Journal of Behavioral Health Sciences & Research, 31(3), 334-342.
[11] Associated Press. (1986, December 7). Home care for chronically ill children examined. The New York Times. Retrived November 8, 2005, from http://query.nytimes.com/gst/health/article-page.html?res=9A0DE2DC163DF934A35751C1A960948260
[12] Associated Press. (1988, April 21). Help sought for children kept alive by machines. The New York Times. Retrieved October 19, 2005, from http://query.nytimes.com/gst/health/article-page.html?res=940DEFD6173EF932A15757C0A96E948260
[13] Semansky, R. M., & Koyanagi, C. (2004). The TEFRA Medicaid eligibility option for children with severe disabilities: a national study. The Journal of Behavioral Health Sciences & Research, 31(3), 334-342.
[14] Semansky, R. M., & Koyanagi, C. (2004). The TEFRA Medicaid eligibility option for children with severe disabilities: a national study. The Journal of Behavioral Health Sciences & Research, 31(3), 334-342.
[15] Semansky, R. M., & Koyanagi, C. (2004). The TEFRA Medicaid eligibility option for children with severe disabilities: a national study. The Journal of Behavioral Health Sciences & Research, 31(3), 334-342.
[16] Beckett, K. (2002). Family Story. Retrieved December 8, 2005, from http://www.partoparvt.org/02sKatie.html
[17] Beckett, K. (2002). Family Story. Retrieved December 8, 2005, from http://www.partoparvt.org/02sKatie.html

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