I guess I should feel fortunate that my two adult sons will never be able to do anything that resembles work. The most rabid ideologues who insist that even the most profoundly disabled citizens can and should work at a paying job, tend not to spout this kind of rhetoric around people like my sons. How foolish to talk about a person who can't speak, feed himself, wipe his own nose,and who needs a diaper change every couple of hours as a good candidate for a paying job.
On the other hand, I know people whose sons and daughters can and want to work. Their children are in the heartbreaking position of having the hardest time proving themselves worthy of employment when times are good and the first to be layed off when times are tough.
In Washington state, as in Michigan, the idea of paying jobs for everyone is part of the move toward inclusion that has exceeded the bounds of common sense. An article in the Seattle Weekly, Developmentally Disabled, Unable to Speak...Ready to Work?, reports on the state's 3-year-old policy that encourages all developmentally disabled people to find paid employment.
The article begins and ends with the often frustrating task of an employment consultant for a non-profit organization that provides training and support for integrated employment of people with disabilities. He has a case-load of 12 people with severe disabilities for whom he attempts to match their skills to paid employment. His first successful job placement was in January 2009 but it only lasted three months. Another job lasted for an hour and other job possibilities evaporated with hiring freezes.
The article recounts some interesting personal stories about the push for integrated employment and reveals a healthy skepticism by parents. As one parent says, "It's their agenda. It's not my daughter's agenda."
Washington state has decided that all activities it funds for developmentally disabled adults under age 62 will be related to finding and keeping jobs. Sheltered workshops, that have worked well for some and not for others, are being phased out. Recreation programs are no longer being offered as an alternative to job programs except for a limited number of people (35) who have been granted an exemption by the state.
Ray Jensen, the director of King County's Developmental Disabilities Division sees employment as a civil right and further claims that any program that congregates developmentally disabled people is no longer desirable or allowable: "I can show you law after law that says we can't segregate people."
I do not have the foggiest idea which "law" he is referring to, but it must be the same imaginary law that advocacy groups in Michigan cite when they claim that the existence of residential facilities, group homes, center-based school programs, and other programs designed specifically for people with developmental disabilities violate the civil rights of the people they serve.
Phasing out and eliminating costly but necessary programs for people with severe disabilities will save the state money, but the article points out some of the added costs of the state's approach. The cost of a full-time job coach for one man is $2,250 per month (that's around $33,000 per year). A sheltered workshop where one supervisor looks after a group of seven people costs about $7 per hour compared with $25 per hour for one-on-one support. One family referred to in the article decided to have their daughter live in a full-time, live-in institution paid for by the state, because there was no other way to get services appropriate to their child's needs.
A full array of programs is obviously necessary to meet the needs of this diverse population. As one parent puts it, keeping in mind the civil rights of her daughter, "If she is too disabled to work, then she doesn't get [state assistance]. If you think about discrimination against people with disabilities, you expect that from the outside world-- not from people in the disability community."
Yet another meeting...
The Washtenaw Community Health Organization is our local Community Mental Health agency that serves people with developmental disabilities as well as people with mental illness and substance abuse problems. Anyone who suspects that a person receiving services through the WCHO has had his or her rights violated may file a complaint with the WCHO Office of Recipient Rights. It is especially important for employees of provider agencies to file complaints on behalf of the people they work with and it is a serious offense if they fail to do this.
Rights violations include various degrees of neglect and abuse, unnecessary invasion of privacy and confidentiality, unsafe living conditions, failing to provide services suitable to the person's needs, failing to treat the person and family with dignity and respect, to name just a few. The Policies and Procedures for the CMH Partnership of Southeast Michigan provides comprehensive information on the rights of people served in the mental health system.
The Recipient Rights Advisory Committee for the WCHO met on June 18, 2009 to review recent data on rights complaints. The data for the second quarter of this fiscal year (January through March, 2009) shows a large increase in the number of complaints received over the same quarter last year (118 versus 66 last year) as well as a large increase in the number of substantiated allegations (allegations that the Recipient Rights determined to be rights violations). This year there were 72 substantiated complaints as opposed to 30 last year during the same quarter.
There have been serious problems with one provider agency that has generated a number of complaints, but this is not enough to explain the increase. The most complaints have been from residential group homes for the developmentally disabled (19) and supported living placements (39). Supported living placements are unlicensed and serve up to 4 people with developmental disabilities with services provided in the home.
Only two of the incident reports came from families or guardians with 58 originating from the Office of Recipient Rights, 25 from recipients, and 24 from staff. It is especially important for families and guardians to be aware of complaint procedures and to use them when problems arise to ensure accountability and to correct problems within the system of care.
For more information on rights violations, go to the WCHO Recipient Rights Web site on how to file a complaint.
The Recipient Rights Advisory Committee meets quarterly with the next meeting in September 2009. There are two openings on the committee. If you are interested in joining the committee or have other questions about recipient rights, contact:
Shane Ray, Recipient Rights Supervisor
(734) 544-3000
rays@ewashtenaw.org
"I go to meetings so you don't have to."
The Washtenaw Community Health Organization receives state, federal and local funds to serve people with developmental disabilities, mental illness, and substance abuse problems in our county. I have started to go to WCHO Board meetings to glean information that might be relevant to people with developmental disabilities and to get a better understanding of what exactly the WCHO does and why.
Much of the time I feel like I am in a Peanuts comic strip listening to the adults talking, who never say anything except, "blah, blah, blah..."
It comes out a little differently here though - more like, "blah, blah, ORR, blah ARR. blah, blah, Engagement Center, blah, OOC, blah, blah, blah, Integrated Health Care Management, blah, blah, SAMSA, blah, blah, blah, PIHP, etc."
I have confidence that some of this will be decipherable with time.
Here is what I learned:
Patrick Barrie, the WCHO acting Executive Director, gave the Director's Report:
- The Governor's Executive Order from a couple of weeks ago laid out cuts of $10 million in"non-Medicaid" funds for mental health. CMH Boards will have cuts in funding from 1-5%, with Washtenaw County lucking out at the 1% level, at least so far. This amounts to a $74,000 cut in state funds.
- The governor's order was quickly approved by the legislature, so there is no going back to restore the $10 million, but there may be appeals concerning the distribution of the cuts for the state's community mental health agencies.
- The WCHO is going to get two grants for disease management programs. A phrase repeated several time was "Integrated Health Care" which has something to do with merging behavioral health care with medical health care. Using the phrase is apparently one way to make sure that mental health care is not forgotten in the push for health care reform. Everyone is a bit nervous about how mental health care will fit into the health care system of the future.
- Policies on 1115 waivers (these are Medicaid waivers that allow a flexible use of Medicaid funding) are redone with every administration. Policy changes are expected at the federal level, but so far no one has been appointed to head the Federal Centers for Medicare and Medicaid Services.
At the April WCHO meeting, there was some discussion about the Engagement Center. I assumed that this was something like a clubhouse for people with mental illness, but that would be wrong. As was made clear at the May meeting, it is a place for people who are intoxicated by alcohol or drugs to go. Its purpose is to divert people to a more appropriate setting than a hospital emergency room to sober up. It could be used by people with developmental disabilities if they found themselves in this condition. Not likely for my kids.
The WCHO's Application for Renewal and Recommitment, the ARR, will be submitted to the state in June to renew the contract to provide mental health services. A summary was provided for the Board's approval.
As usual, the Devil is in the details. I doubt that the Board has a much better idea than I do of what the WCHO is promising to do. Under the category of Assuring Active Engagement (there's that word again), the ARR promises full implementation of the "DD Outcomes tool", whatever that is. The agency will also "refine reports to analyze data pertaining to Community Life Domain.." and adopt system-wide the Evidence-Based Practices for Supported Employment (as opposed to practices not based on evidence?). Under Improving the Quality of Supports and Services, something or someone will "move to relational based contract where outcomes and performance targets are established with providers".
My head hurts.
A WCHO sub-committee, the Organization Operation Committee or O.O.C., submitted a preliminary communication regarding management and oversight of certain providers who staff supported living arrangements for particular consumers. Reading between the lines, there have been some problems with this and the committee is reviewing policies for monitoring these providers. An initial assessment indicates that these policies are inadequate. The size of the provider network has contributed to the inability to adequately monitor the provider's performance.
Intriguing. I will find out more. The next meeting of the O.O.C. is on June 3rd, 2009, 8 - 10 am at the Library Learning Resource Center, 4135 Washtenaw Ave., Ann Arbor, near the intersection of Washtenaw Ave. and Hogback Rd.
Martha Bloom, a parent of a DD adult, was sworn in as a new WCHO Board member. She is the VP of the Ann Arbor Area Community Foundation and involved with other families in Intentional Communities of Washtenaw .
More information on the Internet:
- The Calendar where you can find when and where the WCHO and its subcommittees meet.
- A list of WCHO Board Members and contact information.
I don't know who is traumatized most by my son Danny's dental appointments. Danny? Me? The dental hygienists (it takes at least two)? The brave group home staff person who is in charge of keeping Danny's head still while juggling the sunctioning device? The dentist? We are all victims.
Danny has severe cerebral palsy, profound mental retardation, severe visual impairment, and an extreme aversion to touch, especially around his face, mouth, arms and hands. He is 32 and has been this way since he was a baby, although his tolerance of touch has improved some over the years.
The worst dentist we ever encountered had no idea what he was in for. He ignored everything I told him about Danny's aversion to being touched and the problems that every dentist and dental hygienist had with him over a period of at least 15 years. The dentist plunged in without warning, jamming his fingers in Danny's mouth to do an examination. Danny flailed his arms, screamed,
gritted his teeth and shook his head back and forth until the dentist finally extracted his fingers from Danny's mouth and proclaimed that Danny had a "behavior problem".
No, the dentist had a "behavior problem".
A determined dental hygienist with the full support of a dentist and the rest of the team, can get Danny's teeth pretty clean. Fortunately, he has never had a cavity or needed other work on his teeth, so cleaning has been the greatest challenge so far. But I have often wondered why we can't just knock him out for 20 minutes every 6 months to do a really good cleaning and examination? He has had several surgeries with no problems with anesthesia, his breathing is good, and he is generally in good health.
I know there is a risk to placing a person under anesthesia and perhaps dentists worry about safety, the expense and who will pay the bill, and lawsuits when something goes wrong. But consider the risks of periodontal disease and its connection with serious health problems, such as heart disease, strokes, kidney disease, and diabetes. There are also horrendous stories about people with developmental disabilities whose behavior spun out of control until it was determined that the underlying cause was tooth decay or gum disease.
An article in the May 2009 issue of Exceptional Parent Magazine, caught my attention. "Anesthesia in Dentistry for People with Developmental or Acquired Disabilities" is by Anthony Charles Caputo, a Dental Anesthesiologist (DA). DAs specialize in providing a full spectrum of anesthesia services for special needs patients and dentists. They are trained to manage pain and
anxiety. A postdoctoral Dental Anesthesia residency is a 2-year program that must include experience providing anesthesia for patients with developmental or acquired disabilities. Most DAs provide office-based anesthesia (OBA) services in the offices of other dentists. By having the most modern anesthesia monitors, medications, and equipment normally found in operating rooms, DAs can provide safe and effective anesthesia and other pain and anxiety management in a regular dentist's office.
Dr. Caputo makes the point that just because "dentistry was able to be done" with a patient using milder forms of sedation, does not mean that it was done well. Dental anesthesia allows the dentist to focus on the needed treatment and not worry about the management of the patient. A paper published this year in the Special Care in Dentistry Journal concludes that when considering the risk of anesthesia with the benefit of delivering quality dental care, the risks were minimal and benefits significant to both the patient and the dentist.
The EP article concludes that,
With the full spectrum of sedation and anesthesia services available to dentists in the office-based setting, it is possible to treat the vast majority of patients successfully with sedation or OBA whether it is accomplished by the dentist or a separate anesthesia provider. Sedation and anesthesia techniques are available to dentists so that when other approaches to care are not successful, these treatment modalities are possible allowing the patient to receive treatment safely, comfortably, and successfully.
For more information go to the American Society of Dentist Anesthesiologists and the Special Care Dentistry Association.
Danny's dentist is going to hear about this.
Medicaid funding is a confusing and complex subject, which I will not pretend to understand completely. It is a shared state and federal program where the federal government matches state money according to a formula that varies from state-to-state and year-to-year, depending on the state's economic condition and need. Michigan is very needy, indeed.
According to an article in the Detroit Free Press, May 9, 2009, the increasing number of people in Michigan eligible for Medicaid has increased the state's share of federal stimulus funding. The state, however, will not spend that money on increasing funding to Medicaid providers, but will instead slash reimbursement rates by 4% to providers of Medicaid services. The result will likely be a decrease in the number of doctors who will accept Medicaid patients.
The article cites interesting statistics that raise questions about whether Michigan is doing more harm than good in trying to control costs by cutting fees to providers:
- According to the Michigan Medical Society, the state reimburses doctors 61 cents for every dollar of service they provide. Decreasing that amount by 4%, as the Governor has ordered, will probably result in fewer doctors taking on Medicaid patients. [Several years ago the state eliminated preventive dental care for adults as a cost-saving measure. By the time the benefit was reinstated and reimbursement rates were reduced, the number of dentists that would serve Medicaid patients had significantly decreased.]
- Medicaid participation by doctors decreased from 88% in 1999 to 64% in 2005, the last year surveyed. The number of residents covered by Medicaid has risen every year since 2000 with a 10% increase over the last year.
- One out of every 6 Michigan residents qualifies for Medicaid. Children qualify more easily for Medicaid than adults: if their family income is 150% of the federal poverty level, they are generally eligible.
- According to the article, the drop in reimbursement rates will cost Medicaid providers "...$5.3 million in state payments and about triple that in federal matching funds between now and Sept. 30. The state also will pay about $7.7 million less to Medicaid health plans."
To qualify for the federal recovery funds, the state cannot change eligibility for Medicaid, but the Governor's executive order will cut $3.3 million from Medicaid that will end payments for dentists, podiatrists, chiropractors, and optometrists for the next five months.
Generally, people with developmental disabilities need more specialized care. Reducing the number of doctors who are willing to accept their medical insurance (Medicaid) will surely result in some people not receiving the care they need or reducing the quality and adequacy of care that is provided. The Governor has always promised to protect the most vulnerable of Michigan's citizens, even during the state's most dire economic times. While the state can technically say that it is still providing services to these citizens it is setting the stage for further decline in the state's system of care for people with developmental disabilities.
Year after year, the Michigan Legislature and the Governor resolve their bickering over budget deficits with quick fixes. This year and next year the state will use its federal recovery funds to delay dealing with the state's structural deficits, especially with Medicaid and mental health funding. The difficulty the state is having economically cannot be underestimated, but at least the state might spare us the sanctimonious platitudes about never doing anything to hurt vulnerable people.
According to an article in the Detroit Free Press, 4/26/09, Macomb County Commissioners plan to vote to increase property taxes by 0.356 mills. The increase would cost the average homeowner only $27 a year more in taxes and turn the county government's $10.3 million deficit into a $1.2 million surplus.
County governments contribute to the cost of mental health services and a wide array of other social services and health programs. Revenues raised through tax increases do not erase all problems with the mental health system, but is does help. An informed and active citizenry is necessary to make sure the money is spent well and for the right purposes.
"I go to meetings so you don't have to".
I don't particularly enjoy meetings like this. The people making the decisions affecting our family members get caught up in the technicalities of getting and spending money and overseeing programs in the abstract. It can seem very detached from the realities of life with a severely disabled family member. But considering Michigan's dire financial situation and the instability this creates in our system of care, I decided I need to keep up with what is happening locally as well as with the state. This is my attempt to make sense of our Washtenaw County community mental health system and its relevance to the people they serve:
The Washtenaw Community Health Organization is the administrative agency overseeing services to people with developmental disabilities, mental illness, and substance abuse problems. The WCHO collaborates with the University of Michigan to assure the provision of health care to the consumer populations. It contracts with other public and non-profit agencies to provide services. Community Supports and Treatment Services (CSTS), which used to be Community Mental Health, is the public agency that provides specialized services to consumers along with other contracting agencies.
The WCHO Board of Directors meets on the third Tuesday of the month at 6 p.m. at the Library Learning Resource Center, 4135 Washtenaw Ave., Ann Arbor, near the intersection of Washtenaw Ave. and Hogback Rd.
I did not get to the WCHO meeting in time to get copies of agendas, reports, etc., so I was missing the background materials that is available to the Board. That meant I had to stay awake and listen, not always an easy task.
The WCHO Board accepted a slate of new and returning Board members and elected officers.
In addition to overseeing mental health care in Washtenaw County, the WCHO serves as an administrative agency for three other county affilliates. There was discussion about scheduling a legislative meeting in Lansing including representatives from the affiliates to make their views known to legislators on the MDCH budget process. The feeling was that the Michigan Senate could be a stumbling block to the appropriations process and that it would be best to concentrate on talking with State Senators.
It is assumed that in May, reports will show a deterioration of revenues for the State.
The WCHO belongs to the Michigan Association of Community Mental Health Boards. The Association is changing its fiscal year and membership will cover the next 15 months, instead of 12 months. The cost will be over $2,000.
There was a lively discussion about whether MACMHB membership is worth the cost. It was generally believed that in the past, the organization offered leadership and policy direction. Recently the leadership has changed and the MACMHB is providing primarily training to CMH Boards. CMH Boards pay heavily to attend the state organization's conferences. [$2,000 doesn't sound like much in the grand scheme of things until you think about the help it might give a few families struggling to find respite care for their severely disabled adult children as parents try to hold onto their jobs and homes.]
Donna Sabourin, the director of Community Supports and Treatment Services, reported on the Community Crisis Response Team (CCRT) that responds to emergency situations where consumers are at risk for hospitalization for psychiatric problems. The service is primarily for people with mental illness, but the response team also has people experienced with developmental disabilities and will respond to crises involving both adults and children with developmental disabilities. Although many of the situations that the CCRT responds to end up with the person being hospitalized, the team has managed to divert a significant number by offering immediate stabilization and then follow-up that helps people get the services they need.
The CCRT will hold an Open House on May 1st, 2009, from 1 - 4 p.m. at 2051 S. State St., Ann Arbor, MI 48104 (phone:734-994-8048).
The CSTS is applying for a grant from SAMSA, the federal agency Substance Abuse and Mental Health Services Administration, for "behavioral health care integration". The grant is for $500,000 each year for four years.
The acting Executive Director of the WCHO is Patrick Barrie, who has worked in various capacities for the Michigan Department of Community Health (MDCH) for many years. The Board is seeking a permanent director and went into executive session to select the top three candidates for the position.
