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Office on Disability

Report on Constituency Expert Input Meeting—September 20, 2006

Department of Health and Human Services
Hubert H. Humphrey Building
Office on Disability  Room, 637D
200 Independence Avenue SW
Washington, DC 20201


The U.S. Department of Health and Human Services Office on Disability (OD) held its fifth Quarterly Constituent Meeting in the Hubert H. Humphrey Building on Wednesday, September 20, 2006. The meeting, which was attended by over 25 constituents in-person and by phone,[1] was an opportunity for representatives from organizations serving America’s 54 million citizens with disabilities to discuss concerns with Dr. Margaret Giannini, Director of the Office on Disability, and Dr. Mark McClellan, Administrator of the Center for Medicare and Medicaid Services (CMS).  Dr. McClellan provided updates on Spousal Medicare Coverage, the new rules for Durable Medical Equipment, and Medicare’s Part D prescription drug plan, and responded to constituents’ questions on other CMS issues.  Dr. McClellan, admired for his accessibility and openness to input, stated that this would be his last Office on Disability Quarterly Constituent Meeting.  He had already announced his resignation, and his last day was October 13th.

Office on Disability Director Margaret Giannini, MD, FAAP, opened the meeting by welcoming those in attendance and asking participants to introduce themselves.  She explained the format of the meeting: Dr. McClellan would provide an update on the issue at hand, and would then respond to constituents’ questions.

Meeting Summary

The following provides a summary of the CMS updates, questions and comments of the disability constituency organization representatives who attended the meeting, and the observations, comments and suggestions made by Dr. McClellan.

Opening Remarks

Dr. McClellan thanked all of the disability constituency organizations that helped advocate for improvements in Medicaid to support community-based services for beneficiaries.  He noted that the Deficit Reduction Act (DRA) provisions move the programs in the right direction, and give states the tools they need to make services more available to individuals where the individuals want to be served.  He highlighted the Money Follows the Person (MFP) Rebalancing Demonstration as an example of the new ways states can make community-based care available to Medicaid beneficiaries.  States have until November 2, 2006 to apply for a portion of the $1.75 billion made available in the DRA to receive a higher matching rate for home and community based services provided to individuals transitioned from institutions to community based settings.  He recognized the hard work that went into getting this enacted and expressed his gratitude in working with those in the meeting to make the opportunity available.  He also thanked the constituents for their thoughtful input, and expressed his appreciation of their help during his time as CMS Administrator.

Money Follows the Person CMS Update

After his opening remarks, Dr. McClellan made the following announcements regarding Money Follows the Person:

  • 35 States and Washington DC have filed Letters of Intent to apply for Money Follows the Person funding.[2]

The DRA improves coverage of children with certain disabilities, and gives states more options for home and community-based care.

CMS has also announced that $218 million in demonstration grants will be awarded to up to 10 States to help provide community alternatives to psychiatric residential treatment facilities for children.  23 states have expressed interest in submitting applications for these demonstration grants, also made available through the DRA. The grants will be available over a five year period, and will assist States in their efforts to adopt strategic approaches for improving quality as they work to maintain and improve each child's functional level in the community.  The demonstration will also test the cost-effectiveness of providing home and community-based care as compared to institutional care.

Money follows the Person Question and Answer

Could the Medicare Part D clearinghouse for meetings be replicated for Money Follows the Person?

Dr. McClellan said that that is a good idea and that interested groups should follow up with his staff.[3]

Durable Medical Equipment CMS Update

Dr. McClellan reported that the final regulations were out for Durable Medical Equipment, and that CMS is setting up a competitive bidding program, which will begin to be implemented in the 2007 fiscal year.  Initially, the bidding program will be available only in metropolitan areas.  CMS is currently finalizing the regulations that will guide the program. 

Durable Medical Equipment Question and Answer

If Medicare cuts costs by giving people inferior medical equipment from the start, they will see higher costs later for secondary conditions, such as pressure ulcers. 

Dr. McClellan agreed with that view, and stressed that Medicare rules are not designed to prevent people from getting needed equipment.  The National Coverage Determination (NCD) and Local Coverage Determination (LCD) rules are designed to stop fraud, make appropriate payments, and get people the right equipment, not deprive people of the equipment they need.

Will there be any change in the home rule restricting wheelchair prescription to needed in-home uses?

CMS is working to address the home rule, but the primary effort must be legislative.  Discussants suggested that because of this limit in CMS’ power, the barriers of the home rule are a particularly important target for constituent advocates.

The new LCD rules will cause many people to be down-coded to Group 1 or Group 2 and not be able to access the kinds of chairs they need. 

Dr. McClellan stressed that the intent of the new LCDs was not to cause down-coding, but to increase the accuracy of prescriptions and payments.  He mentioned that the LCD policies would be changed very soon (perhaps even that afternoon), and that the new policies would hopefully reduce the risk of inappropriate down-coding.

Wheelchairs are frequently prescribed by physicians now instead of physical therapists, yet physicians are not qualified to choose an appropriate wheelchair. 

By current law, physicians must write the prescriptions for wheelchairs, after having assessed a person’s needs and functionality. Dr. McClellan would like to see a system in which physicians perform the in-person functional assessment, but leave the power mobility device (PMD) selection and prescription to others with more knowledge and experience, such as physical therapists.

CMS could work with the OD to bring consumer perspectives into the competitive bidding process. Also, the LCD modifications need to take into account the inadequacy of the stand and pivot rules.  Currently, a person’s ability to stand and pivot determines whether he or she is in Group 3 or Group 2.  However, there are many disabilities that do not prevent a person from standing and pivoting, but do necessitate a Group 3 wheelchair.

Dr. McClellan agreed that the stand and pivot rules are a challenge.

Spousal Coverage CMS Update

Dr. McClellan responded to concerns that rules for spousal Medicaid coverage in New York give beneficiaries an incentive to choose institutionalization over home care when there is a community spouse.  He said that the problem is due to the way New York has formulated spousal coverage. Dr. McClellan does not want there to be a financial incentive for institutionalization, and reported that there will be a meeting on September 26, 2006 to help clarify these issues.  Both CMS and New York’s Medicaid office are interested in resolving this issue quickly together, and will be working closely together to find a fair solution that supports community living for Medicaid beneficiaries.

Medicare Prescription Drug Benefit CMS Update

Dr. McClellan first thanked all of the meeting attendees for their help in making the drug benefit a huge success. 90% of Medicare beneficiaries, 38 million people, have drug coverage. Furthermore, there has been very little dropping by employers of retiree coverage, and some beneficiaries are getting coverage from additional sources (triple care). 1/3 of Americans with VA coverage enrolled in Part D. Kaiser and JD Powers and Associates polls have found very high satisfaction rates, and the latter survey found highest rates among dual eligibles (DEs); DEs had a satisfaction rate of 80%. In addition to high satisfaction, program costs have been low, and will be getting lower. The average premium, at $24/month, is only 40% of the expected average premium, and the initial bids from drug companies suggest that premiums may be lower next year. There is no inflation expected in drug plan costs for 2007, and, as such, beneficiaries can expect to maintain the same plan cost next year.

In addition, Dr. McClellan made the following announcements:

  • There will be fewer basic plans available next year, but there will be more options for paying deductibles and addressing at least part of the doughnut hole.
  • The open enrollment period will start November 15th.
  • Information on My Health. My Medicare. is available for download online at
  • Beneficiaries that are satisfied with their current coverage do not need to make any changes for the New Year.
  • People who do not like the cost, coverage, or customer service of their current plans should consider switching, especially if they want better doughnut hole coverage.
  • CMS wants to make partnering with beneficiaries the hallmark of its services. Partnering and seeking input results in better outcomes at lower costs.
  • Medicare Advantage insurance companies will now have to attract people with high expected costs if they want to remain in the program.
  • Beneficiaries should register at to get new tools and services for accessing benefits, especially those that they are not already using. Beneficiaries can also call 1-800-MEDICARE.
  • Medicare beneficiaries are entitled to a free flu shot this fall, and should get it.
  • Most dual eligibles will not have to switch plans to keep zero premiums, although 1 out of every 12 DEs will have to switch plans to keep zero premiums.
  • The primary theme of the My Health. My Medicare. campaign is that beneficiaries can receive personalized information on their plans. Information on preventative care is also available, and has the ability to be personalized to each beneficiary.
  • Some beneficiaries qualified for low-income subsidy (LIS) automatically in 2006. In 2007, those who do qualify for LIS will not necessarily automatically qualify, although many will and will be automatically enrolled. This situation exists because some plans will no longer have premiums below the low-income subsidy amount. Reassignment for LIS beneficiaries will also occur in cases where LIS beneficiaries do not renew their contract with CMS in 2007. These individuals will receive a notification/application for re-applying for LIS. It is very important for people who are asked to re-apply to do so. Also, it is important to know that even if a person is not auto-enrolled and must re-apply, she or he may still be eligible for LIS.

Medicare Prescription Drug Benefit Question and Answer

Could you please elaborate on the special care 3-way package for dual eligibles?

Dr. McClellan responded that CMS has a demonstration in Massachusetts in which Massachusetts seniors eligible for Mass Health Medicaid can enroll in coordinated care plans.  Part of the program administration involves a three-way contract between CMS, the State, and Medicare Advantage Special Needs Plans (SNPs). CMS is working to identify the features of the three-way contract that make it valuable, and the potential for replicating those features through other mechanisms. CMS also recently published “How To” Guides in the areas of  Marketing, Enrollment and Quality that provide clarification on Medicare and Medicaid rules and suggest streamlined processes that States and plans can use to fulfill Medicare and Medicaid requirements. All of these efforts are being made in order to facilitate coordination among the parties that are involved in delivering care to dual eligible beneficiaries, and thereby improve their access to Medicare and Medicaid services and the quality of the care they receive.

Regarding LIS and redeeming benefits, beneficiaries often get caught when their plans shift above the benchmark. Is there a way to measure Medicaid standards against LIS eligibility? 

Dr. McClellan said that they want to keep people in the same plan if they can, and that they will work to get out the comparison information between LIS and Medicaid.

Is it true That if a person likes a plan, but a drug is not covered on that plan, the physician can call in and get the drug approved?

Dr. McClellan confirmed that that is the case. He added that the plans that are doing the best are those with broad formularies and without large numbers of drugs requiring prior authorization.

My organization does not adhere to the predominant insurance model, in that It helps only high cost people. I see this model as the future if we are going to keep people with high care costs in the community and out of the hospital. Will there be a larger shift toward personalized care in medicare and Medicaid in the future?

Dr. McClellan supported this point, saying that personalizing care makes all the difference.  He stated that CMS tries to personalize care in the Special Needs Program.


Dr. Giannini closed the meeting by thanking Dr. McClellan for his extraordinary service to people with disabilities.  Her appreciation was echoed by the other attendees.  As Dr. McClellan left the meeting, his last as CMS Administrator, he was given a standing ovation.

Appendix A

Meeting Participant List


Bergmark, BrianOffice on Disability, HHS
Berland, DanNational Association of State Directors of Developmental Disabilities Services
Brown, JerodCenter for Medicare and Medicaid Services
Cantos, OllieWhite House, Domestic Policy Council
Chatel, DavidCenter for Medicare and Medicaid Services
Childers, AngelaSign Language Associates, Inc. (Interpreter)
Claypool, HenryIndependence Care Systems
Crawford, JulieSign Language Associates, Inc. (Interpreter)
DelMonte, MarkAmerican Association of Pediatrics
Elias, EileenOffice on Disability, HHS
Ford, MartyThe Arc/United Cerebral Palsy
Galbraith, SuellenAmerican Network of Community Options and Resources
Giannini, MargaretOffice on Disability, HHS
Grossman, LeeAutism Society of America
Hargett, KathyParent Advocate
Hopp, TamieVoice of the Retarded
Johnson, CatrioneNational Disability Rights Network
McClellan, MarkCenter for Medicare and Medicaid Services
McGettrick, KateyEaster Seals
McPherson, MerleOffice on Disability, HHS
Rankin, TheresaWETA/Brain Injury Services, Inc.
Roth, MarcieNational Spinal Cord Injury Association
Rozell, DeniseEaster Seals
Sadowsky, JessicaAmerican Network of Community Options and Resources
Savage, LizThe Arc/United Cerebral Palsy
Solkowski, LaurenOffice on Disability, HHS
Sperling, AndrewNational Alliance on Mental Illness
Verdeja, AnthonySign Language Associates, Inc. (Interpreter)

Appendix B

I. States that have filed Letters of Intent for Money Follows the Person RFAs

  1. Arkansas
  2. California
  3. Connecticut
  4. Delaware
  5. District of Columbia
  6. Georgia
  7. Hawaii
  8. Florida
  9. Illinois
  10. Indiana
  11. Iowa
  12. Kansas
  13. Kentucky
  14. Louisiana
  15. Maine
  16. Maryland
  17. Michigan
  18. Mississippi
  19. Montana
  20. Nevada
  21. New Hampshire
  22. New Jersey
  23. New Mexico
  24. New York
  25. North Carolina
  26. North Dakota
  27. Ohio
  28. Oklahoma
  29. Pennsylvania
  30. Tennessee
  31. Missouri
  32. Texas
  33. Virginia
  34. West Virginia
  35. Wisconsin
  36. Wyoming

[1] Please see Appendix A for a list of constituent representatives.

[2] The list of states is available in Appendix B.

[3] For more information, please visit