Thursday, May 28, 2015

2013 Violent Crime Rates against People with Disabilities more than twice that for Non-disabled

A report released by the U.S. Department of Justice Bureau of Justice Statistics (BJS) on 5/21/15 states that:


Here are excerpts from the report:

These findings are based on BJS’s National Crime Victimization Survey (NCVS), which classifies disabilities according to six limitations: hearing, vision, cognitive, ambulatory, self-care and independent living.

  • Persons with cognitive disabilities experienced the highest rate of violent crime (67 per 1,000) among all disability types measured, similar to previous years.
  • Serious violent crime—rape or sexual assault, robbery and aggravated assault—accounted for a greater percentage of all violent crime against persons with disabilities (39 percent) than persons without disabilities (29 percent). Nearly a quarter (24 percent) of violent crime victims with disabilities believed they were targeted due to their disability.
  • About 51 percent of violent crime against persons with disabilities involved victims with multiple disability types in 2013.
  • Nearly half (48 percent) of violent crime against persons with disabilities was reported to police in 2013, similar to that reported for persons without disabilities (44 percent). The reasons persons with disabilities did not report the crime to police were because they dealt with it in another way (44 percent), they believed it was not important enough (21 percent), they believed police wouldn’t help (19 percent) or other reasons (38 percent).
  • Nonpolice victim services agencies served more violent crime victims with disabilities (12 percent) than violent crime victims without disabilities (8 percent) in 2013.

Wednesday, May 27, 2015

"Who Decides where Autistic Adults Live?" Autistic adults and their families or the State?

“It seems pretty simple: community good, institutions bad. But these two terms have proven extraordinarily difficult to pin down.” ... Amy Lutz

Amy Lutz, the mother of a 16-year old with severe autism,  has written an article for, “Who Decides where Autistic Adults Live?” She covers the controversy over the use of Home and Community-Based Services (HCBS) Medicaid funding for settings that the federal government may deem too institutional in nature or too isolating and segregating. Specifically, she is writing about the use of Medicaid HCBS Waivers (called the Habilitation Supports Waiver - HSW - in Michigan) for individuals who but for the provision of such services would require the level of care provided in a hospital, a nursing facility, or an intermediate care facility for Individuals with Intellectual disabilities (ICF/IDD). 

Lutz begins with a description of the Bancroft Lakeside Campus in New Jersey, seemingly ideally suited to the people living there. It may, however, become a victim of the new HCBS settings rule issued in 2014 by the federal Centers for Medicare and Medicaid Services — “Large group homes, farmsteads, and campuses like Lakeside all face possible exclusion.”

The argument over what size a setting should be to receive HCBS funds sounds technical, says Lutz, but “…it touches on a larger question: While many Americans may never need food stamps or unemployment, virtually everyone eventually benefits from Social Security and Medicare. What level of control should the government have over how these subsidies are used? In the case of disabled adults, who should decide what kind of housing best suits their needs? Should it be those individuals and their families, or should it be the state?” [emphasis added]…

Lutz goes through the evolution of institutional care from fifty years ago and emerging alternatives. The 1999 Supreme Court Olmstead Decision determined that unjustified isolation is discrimination based on disability under the Americans with Disabilities Act. Lutz is careful to note, however, that:

“Even advocates of community integration agree that developing meaningful relationships with non-disabled neighbors can be 'a challenge,' as Ari Ne’eman [President of the Autism Self Advocacy Network] put it, and this is especially true when it comes to the most severely afflicted. It’s not a small group: A 2013 study found that over half of autistic kids exhibit aggressive behaviors, which vary in intensity but can be very difficult to treat and tend to continue into adulthood.

"Perhaps it was this population that Supreme Court Justice Ruth Bader Ginsburg was worried about when she carefully crafted her opinion in the 1999 Olmstead case to make it clear that community inclusion might not be right for everyone. Such integrated settings, she wrote, should only be required 'when the State’s treatment professionals have determined that community placement is appropriate' and 'the transfer from institutional care to a less restrictive setting is not opposed by the affected individual.' In other words, forcing developmentally disabled individuals into dispersed community settings that don’t meet their needs is as much a violation of Olmstead as forcing them into institutions." [emphasis added]

This is a long article with many references to innovative programs that use HCBS funds but are now threatened by proponents of an ideology who will not tolerate anything short of “full integration in the community”. Defining what this means, however, has proven difficult, and is most often defined superficially in terms of how many people with disabilities live together and their proximity to people without disabilities.

Amy Lutz is the president of the EASI Foundation, Ending Aggression and Self-Injury in the Developmentally Disabled - “Living with dangerous behaviors is never easy. Finding help should be.”

See also: Olmstead Resources and the Coalition for Community Choice

Monday, May 11, 2015

Michigan issues guidance for use of the Supports Intensity Scale

Michigan Department of Community Health Issues SIS Use Guidance
(from the ARC Michigan Friday Mail)

[The Supports Intensity Scale (SIS) is an assessment instrument from the American Association on Intellectual and Developmental Disabilities (AAIDD).  The test measures an individual’s support needs in personal, work-related, and social activities in order to identify and describe the types and intensity of the supports an individual requires. Some families who have been made aware of the assessment do not believe it is appropriate for all levels of disability. Others have found it helpful for person-centered planning.]

The attached file (Waldrop v. New Mexico Human Services), contains the findings from a SIS lawsuit that was filed in New Mexico. It says that if the state wants to use the SIS to determine services (which is what it is not supposed to be used for in Michigan), then individuals are entitled to advanced notice and Medicaid Fair Hearings.

Earlier this week Thomas Renwick, Director of the Bureau of Community Based Services, BHDDA, issued a clarification on use of the Michigan Supports Implementation Scale (SIS). 
In his memo, Mr. Renwick indicated that “The SIS should be used to enhance and support the person-centered planning process. As with all assessments, the SIS is voluntary and should not be tied to determinations of medical necessity and the authorization of behavioral health services. Supports and services cannot be denied, reduced or discontinued if a consumer and/or guardian refuse to cooperate with the assessment process.”

Mr. Renwick also indicated that the Michigan Department of Community Health’s (MDCH) SIS workgroup was finalizing the Michigan SIS Implementation Manual, which will serve as a guide in outlining the requirements and procedures related to the implementation of the SIS in Michigan.

Persons with questions regarding SIS implementation should contact Belinda Hawks at

2nd Town Hall Meeting on Washtenaw County DD Services - 5/7/15

This was a 2nd meeting to answer questions about services for people with developmental disabilities provided by the Washtenaw County Community Mental Health (CMH) agency.  The subject of the meeting was the review of Community Living Services provided by CMH and pay rates for people using Self-Determination. The meeting was attended by about 50 people at St. Luke Lutheran Church in Ann Arbor on 5/7/15. 

Handouts included:

The Washtenaw County Behavioral Health Task Force Report Frequently Asked Questions

Community Living supports Frequently Asked Questions

Self-Determination: Frequently Asked Questions on pay rates

[The Washtenaw Community Health Organization (WCHO) is currently the name of the CMH agency for Washtenaw County. This will be changing in October 2015 when the agency is reorganized and becomes a CMH agency controlled by county government.]

For further clarification on how changes may affect you or your family member, contact your supports coordinator or other members of the team assisting you with CMH services.

This was mostly a question and answer session, with a lot of questions about the budget for the WCHO that has a $3.8 million deficit out of a total of over $80 million. 

The WCHO has given assurances that the amount, duration, and scope of services to individuals will not be cut. However, from the last meeting it was clear that the Individual Plans of Service (IPOS) will be reviewed to assure that Medical necessity criteria are being applied. Services can be reduced if the WCHO can justify it on the basis that they do not meet criteria for medical necessity. [This has always been true for Medicaid services. One question to ask is what has changed, if you are being told that a service no longer meets the medical necessity criteria?]

Question: If this is a budget problem, where is the budget being cut? Answer: There have been staff changes and many positions will be left open. Presumably, costs may be cut by finding services that are determined to not be medically necessary. The WCHO advises people to work with their clinical team and their fiscal intermediaries to handle changes. 

Self-Determination direct care providers will receive lower rates set by the PIHP (Prepaid Inpatient Health Plan) [PIHPs are regional administrative agencies that pass on Medicaid funds to local CMH agencies] - the CMH Partnership of Southeastern Michigan. Previously,  administrative fees, workers compensation, and other charges were supplemented with other funds, but this will no longer be the case.

Question: Is the Message that Self-Determination is being eliminated? WCHO: No, the agency is still offering this as an option. [The main concern, however, is that a reduced pay rate could make it more difficult to hire and retain workers] Individuals may choose to go back to a more traditional way of providing services through the CMH with less individual control of how or by whom services are provided. 

Medicaid Funding:

Ironically, the improving economy leads to less federal funding for medicaid because federal Medicaid matching funds decrease. CMH has done better when the economy is poor.  

There are 33,000 Medicaid enrollees in Washtenaw County. Capitation is the part of funding available that is conditioned on a set amount per person.

Healthy Michigan is Michigan’s version of Medicaid expansion under the Affordable Care Act. It covers people with incomes at or below 133% of the federal poverty level ($16,000 for a single person or $33,000 for a family of four). this means that there are a lot more people covered by Medicaid, many of whom have needs for mental health services, but the rate paid is lower under Healthy Michigan than that paid for people already qualifying for regular Medicaid. This results overall in less funding for people needing mental health services, but more people needing these services.

Comment: If we spend less now, less funding will be available in the future to the extent that it is based on current spending. WCHO: The IPOS process will not change.

Comment and Question: Are Cuts expected in future years? Are we going toward a system that gives a given sum of money to families ($20,000/year?) to spend as they choose?

Question: When rate changes for Self-Determination were contemplated, why wasn’t the community brought in? Answer: Decisions were made in public meetings of the PIHP with time allowed for public comment. No special announcements were made. 

Complaint: The rate change is a done deal, that we are being informed of, but we were not included initially in making the decision.

Question: Who is the leadership for the WCHO and why were we not being well-represented when decision to lower rates was decided? [The higher cost of living in Washtenaw County should be taken into account.] Are the people making the decision elected?  Answer: The WCHO was represented by the Executive Director and others hired by the WCHO board. The Board is not elected. [It does include people with disabilities and family members of people with disabilities.]

Question on “Goods and Services” for Self-Determination: Can unused Goods and Services money be used to fill in the gaps? Answer: WCHO is not sure. 

[FYI: “The purpose of Goods and Services is to promote individual control over, and flexible use of, the individual budget by the HSW beneficiary using arrangements that support self-determination and facilitate creative use of funds to accomplish the goals identified in the individual plan of services (IPOS) through achieving better value or an improved outcome. …A Goods and services item must be identified using a person-centered planning process, meet medical necessity criteria, and be documented in the IPOS [Individual Plan of Service]” This is from the Michigan Medicaid Provider Manual, page 979 of the PDF file that is available on-line. I have been told never to click on print when looking at this document. It is 1,840 pages long.]

Question on the Children’s Waiver: This is a state-run, fee-for-service waiver, with the funding coming from the state. So why is the rate for those worker’s being reduced? Answer: The WCHO uses General Fund dollars [these are state funds that are not designated for a specific purpose such as education, transportation, corrections, etc.] to supplement the rate if it is different than what the state allocates. General Fund dollars now available for the WCHO is less that $1million, a very small amount compared to what is needed to maintain services to people relying on general fund dollars.

WCHO Board and Committee Meetings for 2015

CMH Partnership of Southeastern Michigan meeting information

Corrections and comments welcome!

Thursday, May 7, 2015

Another trip to the the ER with plenty of time for thoughtful reflection

Another day in the Emergency Room with Danny. Ho hum. What are you gonna do?

Three days ago, Danny threw up what appeared to be blood, so off he went to the Emergency Room at our local world-famous medical facility. When you need expert medical advice and specialized care, it is a fabulous institution. And it is an “institution” in the best and worst sense that the word is commonly understood. But the ER on a Monday afternoon can be a horror show.

Danny arrived at the ER with a staff person from the group home. I got there a couple of hours later and the place was jam-packed. There were sick people everywhere and ambulances pulled up every ten minutes or so with patients who had priority over the people who arrived there on their own. We waited and waited, but there was very little progress for people waiting to be seen by a doctor. The only thing that was happening was that a lot of people were called in to have their blood drawn and then were disgorged back again into the waiting room.

After I had been there for an hour or so, a man sitting in the crowd keeled over. He was having a terrible time breathing and he threw up on the floor. By this time the waiting room had become a small community of groaners, complainers, and the worried well. When the man hit the floor we were admonished by another ill and miserable person to pray for the man on the floor. I prayed that he would be removed as quickly as possible and given some help with his breathing. The ER team swooped in with a stretcher to take him into the inner sanctum.  

As the hours went by, someone saw the man who keeled over walk by in the hallway. As someone announced to the group that the man was OK, we heaved a collective sigh of relief.

At one point, about six people decided they would rather die at home than in the ER; they rose as one and left. Our small community had shrunk but we were now, on average, sicker and more pathetic than before. Danny suddenly had a desperate need to have his brief changed, so we were allowed to come into the inner chambers to occupy the smallest space possible to get him taken care of. An older woman who had waited about 9 hours was finally wheeled in to see a doctor. She waved to the crowd. We waved back and wished her well. At about 10 pm Danny officially entered into the care of the ER where he would remain until 7 the next morning when a hospital room was finally available for him to be admitted. 

There is much to be said about his hospitalization, but for now, it is enough to say that Danny will be OK and will soon go back to his group home.

A Crowded ER - Not Just a Local Problem

Sitting around in the hospital room, I discovered that the problem of overcrowded emergency rooms was not confined to my own sprawling medical facility. In an editorial in the New York Times for 5/6/15, Ezekiel J. Emanuel wrote on the subject, “How to Solve the E.R. Problem”.

He explains that one of the selling points of health care reform (Obamacare) was that by expanding insurance coverage, the unnecessary use of emergency rooms would decrease as preventive care became more available. It turns out that increasing insurance coverage alone was not sufficient to reduce the overuse of emergency rooms. In fact, the opposite has been true: major surveys have shown substantial increases in ER use, probably because newly insured people no longer have a co-pay for ER use.

Emanuel finds hope, however, in a Seattle partnership:  “…Group Health Cooperative of Puget Sound, a nonprofit that provides health care and insurance, and SEIU Healthcare NW Health Benefits Trust, which delivers health benefits to thousands of home health care workers, have reduced emergency room use among a subset of the trust’s membership by 27 percent over four years.”

The partnership's approach is this: “First, it offers a $100 cash incentive if workers complete four steps. The steps evolve each year but have included signing up for MyGroupHealth, an online platform where workers can email doctors, order prescriptions, and access health information and self-help resources; completing a 'health risk assessment,' a tool commonly used in corporate wellness programs; and completing preventive primary care and dental appointments.” Then it raised the co-pay for an ER visit to $200, a strong disincentive to use the ER if you have an alternative.

If you read the article, look at the comments, also. They provide an interesting critique of Emanuel's editorial.