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DRAFT
2005 MR/DD WAIVER RENEWAL APPLICATION
COMMENTS

A few of the comments submitted by individuals on the 2^nd draft application:

• Anne Gentry

• Vicki Shaffer

A few of the comments submitted by individuals on the 1^st draft application:

• Scott Miller

• Bev McCoy

• Anne Gentry

• Lucy Kimble

• Stephen Donalson

Thank you for giving me the opportunity to respond to the Waiver Draft Application. I would first like to say that I spent two hours reading the document and found a number of concerns including the reduction in transportation, lack of any real quality plan, and the reliance on a private managed health care organization with an abysmal record of providing services in other states. After talking to other people, it became clear that it would take quite a bit of time to really be able to make comment on the details of the application. One individual and one organization, that I know of, took the time to do this work. I have read the researched work that both Debi Lewis and the WV DD Council compiled for comment to BMS. I wholeheartedly agree with all their recommendations. I do not feel it necessary to comment further on the specifics of the application, nor could I have done it so thoroughly .

What is clear to me is that the people who are submitting this application either have very little understanding of what a self-directed waiver really means or are purposely avoiding supporting the concept. If there is some other explanation, PLEASE e-mail me immediately. I would be thrilled to have a more positive perspective on this process. I understand that the “people in charge” are busy people and can’t know all the details that are necessary to provide quality services and almost always have staff that work under them who do the research and writing. AND that many of the important decisions are made from the top down.

The use of some politically correct terminology does not mean that what has been proposed comes anywhere close to providing individuals with the supports that will make a difference in their lives. There are so many good examples from across the country of Waivers that support people to live quality lives in the community within a structure that can be cost neutral (see CMS best practice web sites, here’s one (just click on it) cms promising practices site), that it is frankly shocking that the Department chooses to pay only lip service to it. This includes systems that support individuals to manage their own services, have built in quality monitoring that has proven effective and can save money. How is it that participants and trusted allies of people who use Waiver services can have a vision that is consistent with CMS and is being carried out in many states across the country and the EXPERTS in BMS don’t have a clue? I really would like to have an answer or at least a discussion about this question. A self-directed option within the Waiver Program does not cost more and many people would receive more appropriate services.

It’s time to cut the BS and sit down with ALL the people affected and figure this out. NOT JUST THE PROVIDERS. This application is a travesty of one sided old time thinking. I have given the Dept. every opportunity to look at how other states have accomplished this task and have not heard ONE WORD back from anyone.

I know there are dedicated people within BMS who want to do the right thing. I also know, that there are people who are not so willing to involve people “below” them in making these important decisions.

I look forward to a response in the next three working days.

Sincerely,

Scott Miller   [TOP]

March 20, 2005

TO: Pat Winston, Bureau for Medical Services

FROM: Beverly McCoy

RE: Comments on proposed Title XIX MR/DD Waiver renewal application

As the parent of a significantly handicapped child served by the Title XIX waiver program and a concerned West Virginian, I have grave concerns about both the comment process for the MR/DD Waiver Renewal Application and the changes proposed in that document.

In the best of circumstances, eight business days is far too little time to analyze a complex and lengthy document. Unfortunately, two factors made the actual time available even less than that: my family did not receive a notice from the DHHR about the renewal draft’s comment period, and one-fourth of that time was gone before we learned of it from another parent; furthermore, the document itself is not available for review today due to problems with the DHHR computer server. It is disturbing to think that those computer problems may even prevent many people’s comments from being received by the deadline.

I respectfully request that the comment period be extended, with the DHHR providing a description of the changes it is proposing and their anticipated impact. Only with this information and time to process it can consumers and other stakeholders have an authentic voice.

If this is not done, I emphatically second the request of the West Virginia Developmental Disabilities Council that the DHHR submit a renewal application that contains no changes from the approved plan now in place other than adding a reasonable number of additional slots for the coming year, with the idea that the department can submit an amended application once the department and stakeholders have the opportunity to develop a plan that addresses the concerns and needs of both.

Please make the changes recommended by the Developmental Disabilities Council in its Comments analysis.

I particularly request the reversal of the following proposals or omissions, which will significantly reduce the ability of individuals with MR/DD to live and participate in their communities.

        * The proposal to keep the number of slots unchanged while keeping the waiting list moving at a "reasonable pace" suggests that a great many consumers are going to be removed from the waiver program. Any such proposal must be subject to open and informed debate. In the absence of an explanation, I must oppose the eligibility change proposed on page 2, item 6.

        * The proposed deletion of adult companion services for people who live with their families. This will both harm individuals and provide a boomerang cost increase to the state as individuals are forced out of their family homes.

        * The apparent plan to require significantly more pre-authorization of services without, as the DDC notes, disclosure of the premises and decision rules that will be used to limit access to services.

        * The dramatic reduction in the maximum billable mileage will be crippling to individuals in rural communities and undermines the intent of the waiver program.

        * The absence of a state request to renew the exemption that allows the community residential habilitation category, which is the only solution that has been able to meet the needs of consumers in situations in which adequate staffing cannot be otherwise achieved.

        * The significant limits on crisis services and the exclusion of people with mental illness, which often co-exists with developmental disabilities.

Given the widespread concern about the previously performed program assessment, the major changes recently made (with inadequate consumer input) in the waiver policy manual and the unknown but predictably significant impact of the external contract for utilization review and prior authorization, I believe it is essential that the state have an independent assessment conducted and the results shared with stakeholders and submitted to HCFA.

The department’s recommendations are, I suspect, driven by concerns about costs. Those are concerns that consumers share, and we are quite willing to work with the DHHR to find solutions. The Title XIX MR/DD waiver program is an irreplaceable support that enables some of our state’s most challenged citizens to live and participate in their communities. As the parent of a child who needs its supports, and as a taxpayer who knows that the cost to the state would be far greater if individuals such as my son had to be served in institutional settings, I believe it is vital that the proposed changes be set aside and replaced by a collaboratively determined plan that is sustainable for the state while still meeting individuals’ needs.

Thank you for the opportunity to comment on this proposal. I look forward to seeing the final document that is submitted to CMS. Please send me a copy of the changes you make after reviewing the public comments.

Beverly McCoy   [TOP]

Pat,

Included are my comments about the Title XIX Home and Community based waiver application.  Let me say in advance, however, that less than a month to review 91 pages of this document is ridiculous.  There are many consumers for whom this is not an option.

Also, whatever happened to the Quality Assurance document for which Mike Cheek of the Lewin Group,  was collecting data and information?  That has yet to be presented to the public.  Please send me a copy of it.  Thanks. Word on the street is that DHHR paid for it but then didn't get it.  I hope this is not true.

Anne Gentry

~ ~ ~

What is FFP? 

Quality of care assessment  not to be done.  (No. 17)   Why not?  Quality of care assessment was to be done by Mr. Cheek?  And so far none is forthcoming. It makes one wonder what the assessment determined to be the quality of care.  Poor?

What is with the prior authorization determination?  That has potential to create incredible delays of services or denial of reimbursement to agencies.  What is the purpose of the team determination if APS then has the right to say no.  Will APS personnel be part of the IPP team?

Supported employment only for those not expected to be competitive. What about people who could be competitive if they had the support, i.e. people with autism who may lack the social skills but not lack the job skills.   Does it only apply to those people who have been de-institutionalized from the listed facilities?   (Page 16)

Transportation mileage has decreased from 1300 miles to 500 miles.  Especially for people living in rural areas, this can create a terrible hardship and essentially, result in imprisonment in one's own home.  This is especially true for those people who choose not to live in a group home where mileage might be shared.

Service limitation to crisis?  What happens if someone exceeds that amount of hours/year?  Do they automatically get institutionalized, which this waiver is to try and prevent?  Do they remain as a risk to themselves or others in their own home?  Where WV does not have institutions for people with DD (thankfully), will those people be shipped out of state or be left to fend for themselves?

Nothing in this waiver applies to people with mental illnesses.  What happens to them?  Why doesn't the state have an interest in providing them services in the community?

Freedom of choice: Appreciate this section being in the application.  How will this be determined when currently, agencies say to consumers, it's all or nothing?  Your child isn't lucrative without us taking all the services?  We don't allow anyone to contract services if you would like a different Q.   I would like how this will be defined in this application and how it will be implemented.

Define 235.217 when talking about post eligibility requirements.

It's unclear how the number of individuals remains the same for 5 years yet the state asserts the waiting list will move at a reasonable rate.  I guess the definition of reasonable needs to be in this document.

That a current quality management system exists is not obvious.  There needs to be documentation somewhere as to what that means.   The Quality Assurance/quality improvement committees are not obvious to most people involved in Waiver services.  Perhaps an person to whom people can request under FOIA, the meeting minutes and documentation they reviewed would be helpful.  Otherwise, some might be tempted to call this Quality Dreams while using some high quality hallucinogens.  For example, I know of NO functioning human rights committees in any agency as this document assures. If something as important as that is alleged to exist and doesn't, what else in this document is fiction. That the QA/QI will lead the state in the development of specific initiatives that produce improvement of services is scary at best.

There is no provision for individuals who exercise the right to disagree through due process to appeal into the courts.  Nor is there a process so consumers who prevail at the fair hearing level, or even circuit court level, can get their finding enforced.  This is a significant deficit and needs included in this document.

There is nothing in this that allows for consumers to be protected when providers "fire" the consumer for such reasons as "difficult parents," "not lucrative enough," and "too many behaviors to deal with."  It would be appropriate to state that any provider who accepts medicaid payment, will accept any client who applies to their agency unless there is not space for them in the program.   [TOP]

I'm not even going to bother thanking DHHR for the opportunity to respond.  It was clear from the comments on the original application, that stakeholders wanted to be part of baking the cake, not simply icing the cake or serving it up for dessert.  Yet again, consumer input was asked for after the fact.  That two DDC members met with DHHR means little.  Let the disability community pick 1/2  the members of the team that draws up your third application.

But, comment I will.  Re: The DDC's comments.  I think it is damning that the quality assurance component that DHHR says is up and running to protect consumers is a farce and exposed as such by an organization (DDC) that has a member on the team.  That alone should put anything in this document in the ":suspect" category.  This is especially true as there was not significant consumer input.  I would recommend that DHHR truly recognize consumer input at the initial level of development rather than at the tail end.  Throw out these attempts and include real consumer input in a "real" document.

The new assessment tools add an additional expense with little to guarantee useful information.  Other states have used these tools and found them wanting.  But, just a reality check...there are 3800 people on Title 19 Home and Community-based waiver. Assuming each person doing the assessment bills the state $150 (the going expense for a yearly psychological), that's 3800 X $150.00 or $570,000 for assessments that other states have found lacking. 

The tiered system that is being proposed was found unmanageable in other states.  If that is so, why in the name of Pete, is WV trying to resurrect the dead?  I recommend picking, say, 100 consumers who want real person centered planning and use them as a model to see what their team will come up with regarding services wanted/needed.  In the meantime, continue with what exists for everyone else while a consumer driven team and DHHR develop a "real" person-centered Waiver application.

Because DHHR calls it person-centered only indicates they've picked up the latest buzz-words.  By creating another layer of bureaucracy, with someone who isn't a member of the team  making decisions for the consumer does not strike me as person-centered.

There continue to be problems with the 14 day crisis plan.  First of all,  home may NOT the place to spend 14 days with a person in crisis...talk about person-centered.  It is obvious that the person writing that either has never had a family member in crisis, or has never been a family member in crisis.  Home may be appropriate, but what if it isn't?  Furthermore, what happens after the 14 days are up?  Who determines if a "crisis" still exists?

Why is APS being used?  It is not obvious how that will solve anything person-centered.  They do not have a strong track record re: person-centered programming.

There continue to be problems with the Service Co-ordination being done by the agency that provides services to the client.   How the heck a "fire-wall" provides independence when everyone concerned knows who the SC is (including the agency that the SC may be at odds with) is beyond me.  Perhaps another explanation would be in order as the one given makes no sense. 

There needs to be a real fair hearing process with timelines and the ability of consumers to recoup attorney's fees.  In addition, a recent court decision in WV said that the hearing officer had no authority to make a ruling.  If that is true, exactly where does that leave the fair hearing process? 

There continue to be problems getting fair hearings implemented.  This is not addressed in this draft.

Personal responsibility continues to be a buzz-word that DHHR has added to its vocabulary.  Unfortunately, they didn't learn what the word means.  There is nothing in this document to indicate how DHHR will insure that agencies actually do what's on the IPP, do it legally and do it in such a way as to promote independence.  If the quality assurance team is to be involved in that, how will that work?  Will there be consumers on the team?  Consumers welcome personal responsibility....on their behalf, on agency behalf and on DHHR's behalf. It is not obvious from this draft that DHHR considers any but consumer responsibility.

Please consider carefully the comments made by many others.  The disability community remains incensed that it has not been a part of the process in developing this draft.  Until we are included, this application will be perceived as nothing but empty air.  We have all dealt with DHHR in the past.  The history is not one to encourage optimism.

Anne Gentry   [TOP]

Vicki L. Shaffer   [TOP]

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This page last updated Friday 24 June 2005