Saturday, June 30, 2012

Comment #4 (CMS-2249-P2): Defining Home and Community Based Settings

CMS has not given a sufficient explanation here of why the agency has decided that it should restrict funding to settings with “institutional qualities” as defined by these rules and at the discretion of the Secretary of Health and Human Services.

This language is included in the proposed rules acknowledging that institutional care in nursing facilities, intermediate care facilities for the mentally retarded, hospitals for mental disease, and other hospital settings is not prohibited:

We note that this proposal in no way preempts broad Medicaid requirements, such as an individual's right to obtain services from any willing and qualified provider of a service. We further note that States are not prohibited from funding institutional care under Medicaid. The exclusion of these settings from HCBS waivers and from the State plan HCBS benefit does not limit the availability of institutional and facility-based care for those individuals who require long-term services and supports, and who freely choose to receive services in those settings… 

The funding streams for institutions are different from those for HCBS waiver settings and waiver services are by definition alternatives to institutional care. There is nothing, however, in the ADA, the Olmstead decision, or Medicaid law that places restrictions on HCBS settings, based solely on an opinion that a service or setting has institutional qualities.

Comment #3 (CMS-2249-P2): Guardianship and HCBS Medicaid Waivers

Individual Representatives and Guardianship
In other attempts to change the rules for HCBS waivers by CMS, there was no mention of guardians or an acknowledgement that some people are not able to make decisions for themselves. These proposed rules are better in that they mention a role for guardians. The proposed rules recognize representation through state guardianship laws and other methods:

When an individual is not capable of giving consent, or requires assistance in making decisions regarding his or her care, the individual may be assisted or represented by another person. Section 1915(i)(2) of the Act defines the term “individual's representative” by listing certain examples, but also provides that “* * * any other individual who is authorized to represent the individual” may be included. We believe that “authorized” refers to State rules concerning guardians, legal representatives, power of attorney, or persons of other status recognized under State law or under the policies of the State Medicaid program.

This paragraph, however, is troubling:

States should ensure that the representatives conform to good practice concerning free choice of the individual, and assess for abuse or excessive control. States should also ensure that the person-centered planning process continues to be focused on the individual with HCBS support needs and his or her preferences and goals, and supports are provided so the individual can meaningfully participate and direct the process to the maximum extent possible. We are proposing to provide that the State may not refuse to recognize an authorized representative that the individual chooses, unless the State discovers and can document evidence that the representative is not acting in the best interest of the individual or cannot perform the required functions.

In Michigan, guardianship is under the jurisdiction of the probate court, not the executive branch of state government or the agencies that oversee Medicaid. There have been several attempts to undermine the authority of guardians with proposed guidelines and policy statements from the Michigan Department of Community Health. The MDCH, however, may not usurp the authority of the Probate Court to appoint and monitor guardianships, although anyone can challenge a guardianship in court and ask the probate judge to review it. When a guardian is suspected of neglecting or abusing a ward, he or she may be reported to Adult Protective Services and the probate court. When a Community Mental Health agency has evidence that the guardian is not acting in the best interest of the individual, that issue may also be reported to the court, or the agency may go through appeals processes that are also available to the guardian to establish the appropriateness of services for the individual.

If the agency overseeing Medicaid or the provision of waiver services to the individual were allowed to make judgments about the competence or motives of the guardian, this would be an egregious conflict of interest. Guardians, most of whom are parents, siblings, or other family members, can be the most tenacious defenders of the rights of their family members. In fulfilling their responsibilities as guardians they are in the best position to challenge the decisions of agencies that the guardian feels are not acting in the best interests of their wards. Allowing the agency to make judgments on their role as guardian sets them up for intimidation and undermines their ability to meet their responsibilities as guardians.

This needs to be clarified to make sure that state laws regarding guardianship and the jurisdiction of the courts is respected. Furthermore, guardians are appointed by the court, not chosen by the individual, although in my experience the court does try to determine the preferences of the individual.  Many people are limited in their ability to make these kinds of choices, which is why they need guardianship in the first place.

Comment #2 (CMS-2249-P2): Choice for all - It's the Law

The law is on the side of maintaining a full range of options and services covered by the HCBS waivers:

  • The Supreme Court's Olmstead decision supports choice, despite the fact that it has been widely misinterpreted as a mandate to close all institutions: “We emphasize that nothing in the ADA or its implementing regulations condones termination of institutional settings for persons unable to handle or benefit from community settings...Nor is there any federal requirement that community-based treatment be imposed on patients who do not desire it.” 119 S. Ct. at 2187. Furthermore, the Olmstead decision does not comment specifically on or mandate the closure of community-based programs or residential placements of any particular size nor does it designate these programs as institutional in nature and therefore discriminatory.
  • Olmstead, and by extension the Americans with Disabilities Act, gives no support to eliminating or limiting access to settings that are "institution like", housing complexes that are "disability-specific" or designed around an individual's diagnosis, or housing complexes of any particular size, if these settings are appropriate to the needs of the individual.
  • Medicaid law for the waiver programs narrowly defines institutional care as care received in a nursing facility, an intermediate care facility for the mentally retarded, a hospital for mental diseases, or other hospital settings. It does not limit or define community settings in terms of “institutional qualities”. 

Whether it is proper for CMS in proposed rule changes to reinterpret and limit access to community settings that have “institutional qualities” is highly questionable.

The person-centered planning meeting should be the place where the individual’s needs and preferences are matched with compatible and appropriate services and living arrangements and where modifications to existing settings and acceptable compromises are determined. Maintaining a full continuum of services and settings is a better plan than limiting options or making them harder to access because some people might find them objectionable.

Comment #1 (CMS-2249-P2): CMS proposed rules for Medicaid Waivers

Comments on proposed federal rules on Home and Community Based Services waivers are due on Monday, July 2, 2012. (Michigan's HCBS Medicaid waiver for people with developmental disabilities is called the Habilitation Supports Waiver.) Here is a link to the comments that I submitted on the government website today. The rules are proposed by the Centers for Medicare and Medicaid Services (CMS), the federal agency that regulates Medicare and Medicaid. If you are submitting testimony, make sure you identity the rules with the code CMS-2249-P2. And good luck with the government Website, . I find it confusing and frustrating to use, but I did manage to get my comments submitted, so you can too!

Here is my first comment:

I am the parent of two adult sons with profound developmental disabilities who live in a group home in Ypsilanti, Michigan. They are 35 and 27 years old and are supported in part by Habilitation Supports Waivers, Michigan’s version of the Medicaid 1915(c) Home and Community Based Services Waiver....

The CMS proposed rule changes cover a variety of Medicaid waiver programs. There was a rule for the new 1915 (i) waiver program that I commented on with the assumption that its provisions are basic principles that also apply to the 1915 (c) [for people with DD] and other waiver programs. I was most interested in the proposed rules attempting to define the characteristics of home and community based settings as opposed to institutional settings.

Past attempts [see theddnewsblog posts from 5/25/11 to 7/7/11] by CMS to define characteristics of community-based settings have been contentious. Because of the wide range of needs within the population of people with disabilities, the use of these waivers must be highly individualized and CMS rules need to be sensitive to a full range of disabilities. Some advocacy organizations, especially larger groups that receive funding through a variety of federal government programs, have tried to impose an ideology of full inclusion on all people with disabilities that is simply unworkable and even harmful for people like my sons.

The CMS should be neutral in these ideological battles and write rules that follow the law and allow for individual differences. This is especially important when states and the federal government are looking for any and all ways to reduce the costs of services to people with severe disabilities. Unfortunately, the advocacy organizations often claim that
specialized programs are by their nature wrong and discriminatory and give cover to state and federal governments that close programs "because it is the right thing to do”.

Monday, June 18, 2012

PBS's Frontline on "Dollars and Dentists" and more...

After spending a week at VOR's annual meeting and Washington Initiative (more on this later), I am catching up with all the things I didn't do while I was in Washington, D.C. One of the looming deadlines is July 2, 2012, when comments are due on the most recent attempt by the Center for Medicare and Medicaid Services to narrow the definition of community and limit spending with Medicaid waivers to services that the CMS finds acceptable. 

I followed some links from e-mails I received this morning and found one that is especially interesting to everyone caught in the Medicaid dental dilemma - dental coverage by Medicaid but few dentists who are willing or able to provide the services needed.

According to the NPQ Nonprofit Quarterly, "Sarrell vs. ADA Dental Drama Topic of PBS Documentary", this case and other problems with Medicaid dental care will be featured on Frontline on most PBS stations on June 26th, 2012. A preview of the program called "Dollars and Dentists" is posted in the article.

Another article is a New York Times Op-Ed by Mike Ervin called "Will the Reformers Come for Me, Too?".  In the op-ed, the author recounts events in Illinois: 

"Last week, here in Illinois, the governor signed into law $1.6 billion worth of Medicaid 'reform.' The ax came down on disabled children and young adults who are M.F.T.D. — medically fragile, technology dependent — those who have tracheostomies, are ventilator-dependent or need central intravenous lines. New co-payments and income caps could mean that many of these young people will no longer be able to receive care at home and will have to be institutionalized. No more free lunch for them!"

The author is himself severely disabled and he describes how he and his wife make ends meet with Medicaid waiver services allowing him to live at home. He always thinks common sense, justice, empathy, etc. will eventually prevail but now he is not so sure:

"But that’s gotten harder to believe after this latest round of cuts. It’s a nightmare: the vicious, man-eating Reformasaurus has gone berserk. Even holding up M.F.T.D. kids as human shields can’t ward it off these days. If it will swallow them up, what chance is there for a bearded, sarcastic, unsympathetic character like me?"

Mike Ervin has a blog called "Smart Ass Cripple: Expressing pain through sarcasm since 2010". I run a nice family-friendly blog here, but Mike doesn't. Don't say I didn't warn you. He is direct, politically incorrect, often vulgar, and, I think, hilariously funny. 

Here is a sample on Mike's giving up the use of the "r" word on his blog:

"Fair enough. We’ll not use the word “r” here at Smart Ass Cripple. Consider the word stricken, in spite of its element of comic allure. I am not 'r' so who am I to tell them what they have to call themselves? And I can kind of see their point. Some people referred to the 'r' kids at the cripple elementary school I attended as 'delayed.' That’s a helluvan identity to have to carry around. 'Hello, I’m delayed.'"