Friday, July 22, 2011

The Feds double standard on community living

Here is an interesting article by Sally Abrahms published in the AARP Bulletin for July/August 2011 on housing for homeless veterans.

"Homeless Veterans No More" describes a model program to house and provide services to about 40 formerly homeless veterans at the Gordon H. Mansfield Veterans Community in Pittsfield, Massachusetts. The veterans live in brand-new attached units in a development subsidized by the U.S. Department of Housing and Urban Development and the the Department of Veterans Affairs. Each veteran buys a limited-equity ownership in the development and pays about $7,000 in  rent per year with some of that refunded. In addition to earned income, they receive Social Security and veterans disability benefits

A non-profit organization, Soldier On, created the project and provides medical, mental health, and job training services on-site or at its transitional shelter building next door.

According to the article, of the 550 vets served per year by Soldier On, 88% have substance abuse issues and 84% have mental health issues. Most of these veterans not only were homeless, but they also have disabilities similar to non-veterans who are served through other federally-funded programs.

Compare this situation to non-veterans with disabilities who receive Home and Community Based Services (HCBS) through waivers that allow Medicaid funds to pay for services in the community. The same federal government that subsidizes and supports vets in the community described above is proposing to place similar communities off-limits for non-veterans with disabilities. The federal Centers for Medicare and Medicaid Services (CMS) characterizes these settings, especially larger congregate housing developments, as isolated, segregated, and not sufficiently integrated into the community to qualify as community based. In fact, for people with developmental and intellectual disabilities, CMS would not even call the Soldier On program a community, dismissing the idea that people with disabilities with common needs and interests might chose to live together for their mutual benefit.

If the programs and housing for homeless veterans were subject to the proposed rules from CMS and they had to rely on HCBS funding, they would suffer severe limitations:

  • The Mansfield Veterans Community is located next door to the transitional shelter building where many of the vets receive services. Under the CMS proposed regulations, that would not be allowed because CMS has determined that a setting that is "in a building on the grounds of, or immediately adjacent to, a public institution; or a housing complex designed expressly around an individual's diagnosis or disability" is not sufficiently integrated into the community.
  • Soldier On has received federal funding to build 60 homes on the campus of the VA Medical Center in Northampton, Massachussetts, a program that would not receive Medicaid funding or support under the proposed CMS rules. The VA Medical center has 85 psychiatric beds and a 66-bed nursing home care unit located on the Northampton campus, making it too institution-like for the CMS, regardless of whether residents could use the services provided there.
  • Residents at the Mansfield Veterans Community have a great deal of personal freedom and independence, but there are rules they have to follow. They are accountable for their actions, such as for not paying their rent on time or having a drug or alcohol relapse. CMS proposals would only allow settings that do not impose rules on residents that could limit "daily life activities". It is questionable whether the restrictions imposed  on the veterans would be tolerated by CMS  if a disabled non-veteran needed and chose to live in a similar setting.
Of course there are differences in the population of homeless disabled veterans and people with developmental and intellectual disabilities, but there are a lot of similarities such as stigmatization by society, difficulty being accepted and integrated into the community, and numerous unmet physical and mental health needs.

In the case of people with developmental and intellectual disabilities, despite all the lip service paid to "self-determination" and "independence", the federal government and government-funded advocacy organizations believe that they know better than people with disabilities and their families what they should want and need. To unnecessarily limit options available is an impediment to creating a system of care that can truly meet the needs of this diverse population.

Wednesday, July 20, 2011

Michigan public forums on "Integrating Care"

The Michigan Department of Community Health is holding public forums on "Integrating Care for Dual Eligibles in Michigan".

Before your eyes glaze over, let me explain.

Dual eligibles are people who qualify for both Medicaid and Medicare. For an adult with developmental disabilities, this usually happens when a parent who has been paying into Social Security dies or retires. The disabled adult-child becomes eligible for Social Security and Medicare benefits. The vast majority of adults with developmental disabilities also qualify for Medicaid when they become 18 and the family's income is no longer counted in determining eligibility for Medicaid services. Medicaid pays for medical services as well as an array of mental health services provided through local community mental health agencies.

The Michigan Department of Community Health (MDCH) has contracted with the federal Centers for Medicare and Medicaid Services (CMS) to develop a plan to integrate care for people who are eligible for both Medicare and Medicaid. The ultimate goal of the project is to serve this population more efficiently by improving the quality of care and reducing costs.

The forums for public input on the project will be held in four different locations in the state. For those living in Southeast Michigan, the closest public forum will be in Southfield:

 1 - 4 pm on Wednesday, July 27, 2011
The Hilton Garden Detroit-Southfield
2600 American Drive
Southfield, MI

In addition to hearing a presentation from Michigan’s Medicaid agency, forum participants will be asked to describe what they like about the current system as well as issues that exist. They will also offer feedback regarding the state’s proposed approach for integrating care.

WHY ARE THESE FORUMS IMPORTANT? They are an opportunity for people with DD and their families to remind the state that there is a small but important minority of people who are included in this population of "dual eligibles" who are often overlooked in discussions about reform of our health care system.

This is from the Michigan Association of Community Mental Health Boards:

"Persons with specialty behavioral health needs [the latest term for mental health services] make up a significant part of the dual eligible population.  They represent more than 25% of the dual eligible population statewide.   They also represent a significant part of the persons served by the public mental health system.  In FY09, 54,396 of the persons served by the community mental health system were persons with dual eligibility, more than 25% of the total persons served.   There were 35,339 adults with SMI, 22 children with SED, 18,093 people with DD (6,010 of which were on the Habilitation Supports Waiver).   As a group, these individuals have the most complex care needs of persons served by our system.   As a result, the Medicaid expenditures for the specialty services for these persons was $1.1M, almost 50 % of the total Medicaid expenditures for specialty mental health and developmental disabilities services statewide."

Even if your family member is only eligible for Medicaid, changes in care for "dual eligibles" could significantly affect the delivery of all mental health services. We need to be part of the reform effort rather than victims of it.

More Information:

Agenda for the forums including discussion questions

Stakeholders may submit comments on integrated care eat any time to:

For questions about the forums, contact Dawn Wade at at Public Sector Consultants, at or  (517) 484-4954.

Thursday, July 7, 2011

Michigan Medicaid comments on CMS proposed rules (CMS-2296-P)

Comments from Michigan Medicaid were submitted by Jacqueline Coleman here.  To view the document, scroll down the page to Attachments - "Comments on CMS Proposed Rule CMS-2296-P" and click on "PDF" to open the file.

The proposed regulations affect people who are elderly and live in Assisted Living Facilities and other settings as well as people with developmental disabilities. Michigan Medicaid is concerned with what will happen to people living in these ALF's and other licensed settings who have chosen them over care in a nursing home, if the proposed regulations do not allow waiver services to be provided in these settings. The MI Choice waiver mentioned here is another type of waiver that Michigan uses to provide services to people who are elderly or disabled.

Michigan Medicaid comments on this proposed rule: "441.301(b)(1)(iv) ...A setting is not integrated if it is: (A) Located in a building that is also a publicly or privately operated facility that provides inpatient institutional treatment or custodial care; in a building on the grounds of, or immediately adjacent to, a public institution; or a housing complex designed expressly around an individual’s diagnosis or disability, as determined by the Secretary; or (B) Has qualities of an institutional setting, as determined by the Secretary." 

The state agency makes an important distinction between "optimal community integration" and other options:
Michigan would agree that the description of acceptable settings represents optimal community integration. However, as described it would eliminate important options that now contribute to the array of settings available to adults with disabilities and the elderly. In 2009, Michigan amended its MI Choice HCBS 1915 (c) waiver to include services provided in licensed settings. Licensed settings in Michigan include Adult Foster Care (AFC) homes and Homes for the Aged (HFA). 

As of May 1, 2011, the MI Choice waiver was providing services to 529 participants in licensed settings. Of this group, 387 participants transitioned to the setting from a nursing facility. The other 142 were at imminent risk of entering a nursing facility when enrolled in MI Choice. These are participants who chose the setting and remain there even though they have the option to
return to a nursing facility or, in some instances, move to a more independent setting. The vast majority of these homes would not meet the criteria in the proposed rules. Virtually all of these MI Choice participants would move to a nursing facility. This move to a more restrictive setting would ignore the participant’s choice, diminish the participant’s quality of life and cost Medicaid 2-3 times as much per day.

The following examples describe existing situations that would not meet the proposed criteria: 
  • MI Choice waiver participants living in homes licensed as an AFC on the grounds of continuing care retirement communities that included a skilled nursing facility. The home may provide a high level of independence and community integration. Further, the resident very likely appreciates the proximity to the skilled nursing facility for situations when that level of care is necessary, e.g. recovering from an illness. In some cases, the AFC resident has a spouse in the skilled nursing facility and the proximity allows them far greater opportunities to maintain their relationship. 
  • An AFC or HFA that provides dementia care is a setting designed around a diagnosis, which would exclude it from approved settings under the proposed rules. For the MI Choice participants residing is such settings, the residence provides a more home-like setting and more independence than a skilled nursing facility. A move from such a home to a nursing facility would be extremely detrimental to the resident and would outrage the resident’s family. 
  • Many of the MI Choice participants in licensed settings are not elderly. The preamble to the proposed rules suggests that they would be excluded from the provision that certain assisted living facilities may permissible for older persons. 
  • There are a small number of MI Choice participants living in licensed settings who simply have no other place to live. These include individuals with behavioral problems, such as sexual acting out, that let to their denial of admission by nursing facilities and other settings. MI Choice services provided in a small, all male AFC resulted in a very satisfactory and successful setting. There are also individuals with Traumatic Brain Injuries that presented unique and significant behavioral issues. There are small AFC homes that specialized in care for this population and provide a far more successful and independent setting than any other option.
There are also comments on Person Centered Plans and other concerns that arise out of the CMS proposals. 

Tuesday, July 5, 2011

Ian the Graduate: For he's a jolly good fellow...

Ian graduated from school on June 8th this year. For special education students who make it through the 25 - 26 years they are allotted by Michigan's Special Education law, graduation is a bittersweet moment. Ian has many fans at High Point School among the teachers and support staff who will miss him dearly, almost as much as he will miss them. He will probably see his best friend David only on special occasions. We are working out things for him to do with his time, but the truth is it will be hard to match the program he is leaving.

High Point School is the only center-based program remaining in the Washtenaw Intermediate School District (WISD). It serves 60 - 70 students with multiple disabling conditions, including severe medical, physical, intellectual, and behavioral disabilities. The program shares a building with Honey Creek School, a charter school sponsored by the WISD. For the parents of High Point students, the High Point Program is generally valued most for the skill and experience of its staff and an environment that is caring and supportive of both students and families. The benefit of sharing a building with the charter school for kindergarten through 8th-graders is frosting on the cake.

The inclusion movement, whose proponents insist that all children should be educated together in the same classrooms, has led to the closure of many center-based programs over the last twenty years. High Point avoided closure by bringing regular education students into the special education building. Opportunities for both groups of students to spend time together are informal and relaxed and neither group has had to give up anything to accomplish this.

I am grateful for the teachers and support staff at High Point School who are so good at what they do that even parents can forget just how difficult their jobs are. Students with tracheostomies and feeding tubes, seizures, difficult behaviors, exotic syndromes, and frequent medical emergencies don't seem to faze them. What you see as an observer walking through the halls are purposeful activities and happy and engaged students.

When I think of Ian's friend David, I will always remember him in his favorite spot in the corner of the classroom where he can see and hear everything that goes on. Although he does not talk, I'm almost certain he manages to communicate to his mother everything that went on at the end of the day. He loves to listen in on conversations and stares daggers through anyone who comes between him and his favorite video playing on the TV screen. He has a sign up on the wall that a teacher's assistant found for him that says:

I'd like to think that Ian may do the same some day and boy, will we get an earful.