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Saturday, February 20, 2010

Don't Mess With The Mother of a Special Needs Child!

We have been blessed to live in a state that has a 'Katie Beckett' Medicaid clause, called 'TEFRA' here in SC. Basically, it allows families like ours (i.e. Middle Income), who don't meet the low Medicaid income requirements, to apply for Medicaid just for a dependent who meets a certain set of medical requirements (expected life-long, debilitating prognosis...which trisomy 18 certainly meets). This is great news for families that cannot add their child to their own insurance due to 'pre-existing conditions', or for those who have undesireable insurance. We actually have decent insurance already (Blue Cross - Blue Shield), but this helps us supplement the MANY fees BCBS won't pay. It also allows us to apply for medicaid-based waivers to help with care that our primary insurance won't cover!

We were briefly on a state waiver called Community Long Term Care that gave us funding for 32 hours of in-home nursing care per week. We used that while we processed for the SC 'cadillac' of waivers - the MR/RD (Mentally Retarded / Related Disorders) Waiver. This gives help in the area of nursing AND other things like equipment not covered by private or medicaid insurance. The wait list is long because there are only a certain number of slots available, many wait for years to get on this waiver. Because of Rebekah's critical condition when she came home from the hospital last June with her trach and g-tube, she was placed in the number one waiting spot for the waiver. We were ecstatic! We lucked out and end of November, a slot came open. Rebekah started on the MR/RD waiver the beginning of December! We got bumped up to 42 hours of nursing care per month and were waiting until she got a little bigger to start the specialized equipment orders. This was a happy time because it is known that once you are on this waiver, you basically stay on it until you die or willingly give up your slot.

Things were going great in December and January! We got a consistent nurse that we love to fill in the 42 hours per week, and Rebekah gets loving care that frees me up to do more with my boys during the day. Plus Rebekah has progressed so much in the last few months of nursing care since she has one-on-one attention and someone constantly working with her on her therapies.

Just two weeks ago, we received verbal notification that my daughter was losing her MR/RD Waiver spot. Imagine my shock and devastation! I thought we were pretty 'safe'. The reason for her 'forced' disenrollment? Because the nursing care could be covered/paid for by another entity (the CLTC nursing care is through a different government agency), they decided Rebekah wasn't using the waiver services and, as written in their rules, if you haven't used waiver services for 30 days, you can be automatically disenrolled.

Problem is...I cannot find in writing ANYWHERE anything to this decision. And so I wrote up a 56 page dissertation noting every piece of government documentation I could find on the subject.
That's right...DON'T MESS with the Mother of a Special Needs Child! We not only become a nurse along this path, but apparently we become a lawyer too.

Below is the letter and the summary pages noting the documentation verbiage that directly contradicts their decision.

Good news is, once they found out I was appealing the decision, they did put it on 'hold'. We now wait until we hear back...

February 17, 2010

Dr. Beverly Buscemi
Director SC Department of Disability and Special Needs
3440 Harden Street Extension
PO Box 4706
Columbia, SC 29240

RE: Appeal to the Disenrollment of Rebekah Faith Budd from the MR/RD Waiver

Dear Dr. Buscemi,

We had just received the MR/RD waiver on 12/3/2009 for our daughter, Rebekah Faith Budd. Per the documentation and verbal guidance we have received from DDSN, there had been no indicated problems with her enrollment/status. Unfortunately, we received verbal notification on 2/10/2010 from her E.I., Carolyn Craft, that Rebekah is being disenrolled from the MR/RD waiver and must go back to CLTC PDN nursing care. I spent a frantic 2 days calling various state resources trying to understand why and how this could happen since we had not received any warning or guidance that our participation in the waiver was in jeopardy. One of those contacts, Angela Syphertt, instructed that I could send a letter of appeal to you.

We respectfully submit this letter and the attached supporting documentation as an appeal to the decision to disenroll Rebekah Faith Budd from the MR/RD Waiver program, and request that our appeal is accepted in this form as we have not yet received the official notification letter with the official appeal form/process.

Our appeal is based on four important factors.

  1. Misinformation
    Unfortunately, in the information that was communicated to us since Rebekah’s enrollment, we were never notified nor personally aware that we were not properly using the waiver. Please see Appendix A for our concerns.
  2. Need for monthly medical supplies not covered under Blue Cross Blue Shield or Medicaid
    There are a number of items that our daughter has gone without for months (even before we received the waiver) because we have been battling with the insurance companies and her DME. But, in an effort to be responsible with these state resources for which we are very grateful, we wanted to be deliberate in the items that we requested under the waiver and take our time to document things thoroughly. Of particular interest is her trach supply. According to the manufacturer of her primary trach type, the trach is only good for 28 days once opened. This poses a bit of a problem since we need at least 2 trachs to rotate per month and two back-up trachs for emergencies, and Medicaid will only cover 10 trachs per year! We have been recycling trachs past the recommended usage while we battled this, not realizing that this could be a requested item under ‘Specialized Medical Equipment, Supplies, and Assistive Technology Services’. There are other items too that our DME has not/will not supply that are necessary to Rebekah’s proper care. Please see attachments C & D for a complete description.
  3. Need for Specialized Medical Equipment
    We had already notified Rebekah’s E.I. that we have started the process to request funds for a high-low extension, car seat, and in-home monitoring device for Rebekah, as she is getting to the size where she needs certain equipment for her continued well-being. (I cannot attach the complete request list as we are still working with a DME to determine the best of two wheel chair systems for Rebekah, but I have the Speech Therapist supporting documentation and will have the Physical Therapist’s supporting documentation very soon. I would be happy to supply all of these if you need it for your appeal decision.) We also just spent $300 out-of-pocket co-pay for Rebekah’s cranial remolding orthosis, not knowing that this might have been an item we could’ve requested under the waiver. As a final request in this area, Rebekah will continue to have the need for specialized medical equipment as she gets older. The waiver will continue to give us the ability to access funds available for children like her in order to continue to meet her equipment needs during her lifetime.
  4. Other waiver programs inadequately meet Rebekah’s needs
    After reviewing with DHHS and DDSN representatives, none of the other waivers, would be able to provide both aspects of our needs – nursing services AND equipment/resources. Her best resource is the MR/RD Waiver and, as a qualifiable participant, we believe she should remain enrolled.

Repercussions to Rebekah’s disenrollement include:

  • Probably loss of approximately 25% of Rebekah’s nursing care - If Rebekah were to be taken off the MR/RD waiver, we would lose almost 25% of her nursing care allotment (from 42 to 32 hours), as the CLTC had previously only approved her for 32 hours and we received verbal confirmation from the CLTC case manager, Julia Robison, that that would probably continue to be the case. Anyone who took a look at her nurse’s notes would be able to see that she is a very time-intensive little girl who should receive the maximum number of nursing hours available. In-home Nursing Care is saving thousands of dollars by keeping her out of the hospital.
  • Inability for us to provide Rebekah with the equipment she needs as determined by her therapists and doctors, including monthly medical supplies that are necessary for life support (trachs) and her continued health and well-being.
  • The necessity for us to restart the painful and long process to reapply for the MR/RD waiver, which seems an unnecessary process for all of us given that her condition is lifelong, not expected to change, and she would still meet the requirements (we would just have to go on the waiting list).

Please see Table 1 for more details on each point.

Thank you very much for your consideration of our appeal. Please do not hesitate to contact either of us if you have any questions at all.

Susan K. Budd - Mother Michael K. Budd - Father

Table 1 – MR/RD Waiver Appeal Supporting Documentation

Appendix A – Waiver Specifications

  1. Mental Retardation / Related Disabilities Waiver Info Sheet and Services: This was the form given to us when we received waiver services. Nursing Services is clearly indicated on this list. We were in the process of applying for Specialized Medical Equipment, Supplies, and Assistive Technology Services but were never informed that the Nursing Services do not count as a waiver service even though they are clearly listed here.
  2. 4/09 MR/RD Waiver Manual for Service Coordinators and Early Interventionists – Chapter 7 - Disenrollments: Excerpts
    Per the verbiage on this form, we made the assumption that the Nursing Services on the MR/RD Waiver Info Sheet and Services (Appendix A, Attachment 1) were equivalent to receiving services funded through the waiver, so we did not feel an urgent need to request supplies under the Specialized Medical Equipment, Supplies, and Assistive Technology Services.
  3. 2010 HCBS MR/RD Waiver Application Excerpts Effective 1/10/2010:
    Please see Appendix A, Attachment 3 Divider Sheet for a list of highlighted points and the sections of the document being questioned. I cannot find online any documentation supportive of the efforts to have Rebekah disenrolled from the MR/RD Waiver Program.

Appendix B - Nursing

  1. A Day In The Life of Rebekah:
    A look at one day of nursing notes (a THIRD of her day) to see how time-intensive her care is. Please read the notes on the Divider Page discussing the benefits of her MR/RD Waiver nursing services over other options.

Appendix C – Equipment

  1. Letter of Medical Necessity for Equipment:
    This is a medical order and request of items we have been unable to get through Rebekah’s current DME provider, along with the required medical justification.
  2. Sample of 2010 Medicaid DME Fee Schedule:
    This is a sample of the DME Fee Schedule showing that some of Rebekah’s doctor-ordered equipment is not completely covered under her Medicaid plan.
  3. Supporting Therapist Documentation:
    PT and Speech Therapists justification regarding the procurement of Assistive Technology for Rebekah.
  4. 4/09 MR/RD Waiver Manual Ch 10 for Equipment-Relates Waiver Services Excerpt:
    We definitely need equipment that would qualify, but we also have not received enough Service Coordinator assistance in finding a provider who will work with us to procure the insurance denial letters.

cc: Angela Syphertt; Carolyn Craft; Janet Priest


1. MR/RD Waiver Info Sheet and Services
2. April 2009 MR/RD Waiver Manual for Service Coordinators and Early Interventionists – Chapter 7 Disenrollments Excerpts
3. 2010 HCBS MR/RD Waiver Application Excerpts Effective 1/1/2010

APPENDIX A – Attachment 1
MR/RD Waiver Info Sheet and Services

Points of Interest:
• This is the form we received when Rebekah got on the waiver in December 2009.
• Based on this form, she meets participation requirements and none of the termination requirements considering that nursing services is clearly listed as a waiver service.

APPENDIX A – Attachment 2
April 2009 MR/RD Waiver Manual for Service Coordinators and Early Interventionists – Chapter 7 – Disenrollments Excerpts

Points of Interest:
• Page 1 - MR/RD Waiver recipients must be given written notice of disenrollment and appeal process before proceeding with disenrollment (Rebekah does NOT meet one of the reasons not requiring a 10 day notice). We have only received phone calls, yet her waiver participation is placed ‘on hold’.
• Page 1-2 - Rebekah HAS been receiving services funded through the waiver on a weekly basis. Nursing care is not listed as an exception to this in any online documentation or anything we have received.
• Page 7 - We were verbally instructed to pursue a different route of appeal than that listed in Chapter 7.
• Rebekah does not meet the requirements for automatic disenrollment as described in this document.

APPENDIX A – Attachment 3
2010 HCBS MR/RD Waiver Application Excerpts Effective 1/1/2010

Points of Interest:
• Page 1 - Major Changes section still clearly lists Nursing as a waiver service.
• Page 2 - Rebekah STILL meets the ICF-MR level of care criteria (and will continue to meet it). These services are available to people like her and will help us prevent institutionalization.
• Page 3 - Transition plan states that “all current participants will remain appropriate to continue in the MR/RD waiver.” Rebekah was a participant prior to the effective date of this HCBS Waiver Application.
• Page 3 - While the verbiage “the State does not intend to alter the specific service limits to offer exceptions” is intended to apply to participants seeking benefits beyond the waiver, I would argue that it should also mean that the state will not create an exception just to remove a participant that is otherwise meeting all of the enrollment specifications.
• Page 3-4 - The target group is ‘Mental Retardation’ ages 0+. Obviously, the needs of an infant are different than that of a toddler or adult. But the waiver still states that this is applicable to infants too. To remove an infant that will have the same upcoming needs as a current participant a few years older just because they are not ordering a monthly supply of diapers and wipes is a direct contradiction to the target group definition.
• Page 4 - Rebekah DOES receive the minimum number of services (one) in the provision of waiver services (monthly). There is no indication that this minimum number of one cannot be nursing.
• Page 5-6 - We were actually beginning the process to apply for Specialized medical Equipment, Supplies and Assistive Technology when we were told she is being disenrolled. She will most definitely need these services. In addition, I anticipate future Environmental Modification needs and we would absolutely LOVE Respite Care (but were told that this is not available even though it is clearly listed).
• Page 6 - There is no indication that if a user can qualify for CLTC nursing, that they may not receive those services through the MR/RD waiver. Aren’t all MR/RD waiver participants Medicaid eligible and, therefore, qualifiable for nursing through other programs?
• Page 7 – Rebekah definitely has a list of needs that will require assistance under the Specialized Medical Equipment, Supplies, and Assistive Technology Service Specification. Appendix C provides a nice “starter” list of these items.


A Day In The Life of Rebekah – A look at one day of nursing notes, a THIRD of her day, to see how time-intensive her care is.

Points of Interest:

  • Rebekah has spent the last week sick with RSV…but she has spent it AT HOME! Why? Because of a combination of her monthly Synagis shots for RSV AND because of in-home nursing care. Were it not for having nursing care, both my husband and I would have to admit Rebekah to the hospital out of sheer exhaustion from her care. While sick, she has had to be suctioned many times and hour around the clock! She spent several days throwing up and needing constant clothing and bed sheet changes. The nurse has been critical to knowing if/when she should be admitted, and being able to care for her at home as much as possible. This has saved everyone THOUSANDS of dollars in medical bills!
  • Rebekah was briefly on CLTC –funded nursing before she obtained her MR/RD waiver spot. She received the CLTC nursing care shortly after a week-long hospital visit due to upper respiratory distress. Despite the evidence that her care is time-intensive, they only allotted her 32 hours of nursing care per week (with a maximum of 40 available, with appeal, I presume). We started out on the MR/RD waiver with the maximum 42 hours. This has been a tremendous help to us AND to Rebekah. During the last few months of nursing care, not only were we able to keep her home from the hospital through several illnesses, but she has been making strides towards some milestones because someone can spend the time working with her! What a blessing! Please do not make her go back to CLTC. We will not only lose the equipment waiver options, but we could lose from 120 hours (2 hour difference in hours offered * 52 weeks) to 520 hours (10 hour difference in hours offered * 52 weeks/year) of nursing per year!


1. Letter of Medical Necessity for Equipment
2. Sample of 2010 Medicaid DME Fee Schedule
3. Supporting Therapist Documentation
4. April 2009 MR/RD Waiver Manual Chapter 10 for Equipment-Related Waiver Services Excerpt

APPENDIX C – Attachment 1
Letter of Medical Necessity for Equipment

Points of Interest:
• There are several monthly and one-time needs not covered by insurance or current DME.
• This is, by no means, a complete list of medical equipment needs. This does not include the formal order for one-time adaptive-type equipment needs like wheel chair, bath seat, etc.
• An additional letter with product specifications will most likely be needed by a DME. This is not included.
• Other SC waiver programs will not give us an option to seek help purchasing/procuring the items listed in this letter.

APPENDIX C – Attachment 2
Sample of 2010 Medicaid DME Fee Schedule

Points of Interest:
• This is not an inclusive list, but is simply an example of some of the Medical Necessity letter equipment items clearly not being covered under Medicaid.

APPENDIX C – Attachment 3
Supporting Therapist Documentation

Points of Interest:
• Attached are the Physical Therapist and Speech Therapist assessments regarding the need for equipment. Not included is the Occupational therapist assessment since she was recently assigned a new OT therapist.
• We have already begun the process to procure several pieces of equipment for Rebekah including a wheel chair, high-low extension, bath seat, therapeutic equipment and car seat. We are expecting some insurance denial letters as a result of this process. Once the denial letters are received, we would like to seek out trying to get them under the Specialized Medical Equipment, Supplies and Assistive Technology waiver service.

APPENDIX C – Attachment 4
April 2009 MR/RD Waiver Manual – Chapter 10 for Equipment-Related Waiver Services Excerpt

Points of Interest:
• Page 1 - Rebekah has several items listed on her Letter of Medical Necessity for Equipment that meet the requirement of “Specialized medical equipment, supplies, and assistive technology…includes items necessary for life support, ancillary supplies and equipment necessary to the proper functioning of such items, and durable and non-durable medical equipment not available under State Plan Medicaid.”
• Page 2 - We have not received enough support/help in the area of a Service Coordinator OR DME willing to assist us in initiating the SCDHHS Medicaid Certificate of Medical Necessity Form. We are told to get denial letters from the insurance company but that does not seem to follow the procedure laid out in the manual.