Draft revisions to Michigan's Dual Eligibles plan

Is it possible to make the Michigan plan for Dual Eligibles worse for people with developmental disabilities? Apparently, yes, but we all still have a say in how this comes out and so does the Michigan legislature.
 
This is an e-mail from Tom Bird from ddAdvocates of Western Michigan sent out on 9/5/12.  It provides links to documents and other sources of information on Michigan's new proposal for an Integrated Care Bridge between Medicare, Medicaid, and mental health services.

From the Michigan Department of Community Health (MDCH): 

The Michigan Department of Community Health submitted documents to the Centers for Medicare and Medicaid Services (CMS) in response to its request for additional detail regarding the Integrated Care Bridge.  The Care Bridge is Michigan’s model for care coordination that was first outlined in the integrated care proposal submitted to CMS in April 2012.

These documents are drafts of the proposed Care Bridge concepts, have been posted to the website, and will be updated as discussions with CMS and stakeholders continue.
 
See the current Care Bridge concepts here. Scroll down to "Care Bridge Documents - 8-30-2012" for the link to the documents. The direct link to the pdf file is here .

Tom Bird's comments on the proposal:

"This contains the letters to CMS as well as the power point presentation, and a 'narrative' on how the care bridge would work, in addition to the vignettes on how it is supposed to work. The PLC [Primary Lead Coordinator] is supposed to be an ICO [Integrated Care Organization] (multi-county Health Plan) employee, responsible for the initial screening and intake, and the LC [Lead Coordinator] is either an ICO employee or an ICO-certified and trained contractor of another organization which the ICO will ultimately have control over and oversight of. It could be an existing CMH supports coordinator, but they would have to be trained and supervised by the ICO, with their time billed to the ICO. Either way, it puts the ICO (Health Plan) in total control of the 'care Bridge' functions as well as all of the funding for both Medicare and Medicaid (which are co-mingled and can be redistributed as the ICO desires); it puts the ICO in a position to deny or restrict services desired by the consumer, all far removed from the current system of local delivery, which presently offers local input and oversight via control of CMH Board appointments. If you add the incentive for the ICO to restrict (expensive) services due to the proposed 'profit sharing' of any savings, you have a big red flag waving."

Legislative review of changes to the Dual Eligibles plan is required by law: 

The following is wording from the 2012 appropriations law concerning legislative review of plans submitted to the federal Centers for Medicare and Medicaid Services (CMS):

Sec. 264. 
(1) Upon submission of a Medicaid waiver, a Medicaid state plan amendment, or a similar proposal to the centers for Medicare and Medicaid services, the department shall notify the house and senate appropriations subcommittees on community health and the house and senate fiscal agencies of the submission.

(2) The department shall provide written or verbal biannual reports to the senate and house appropriations subcommittees on community health and the senate and house fiscal agencies summarizing the status of any new or ongoing discussions with the centers for Medicare and Medicaid services or the federal department of health and humanservices regarding potential or future Medicaid waiver applications.

(3) The department shall inform the senate and house appropriations subcommittees on community health and the senate and house fiscal agencies of any alterations or adjustments made to the published plan for integrated care for individuals who are dual Medicare/Medicaid eligibles when the final version of the plan has been submitted to the
federal centers for Medicare and Medicaid services or the federal department of health and human services.

(4) At least 30 days before implementation of the plan for integrated care for individuals who are dual Medicare/Medicaid eligibles, the department shall submit the plan to the legislature for review. [emphasis added]

***************************************

Here is a refresher course on the issues regarding dual eligibles and people with DD.

Vulnerable seniors at risk from paid home caregivers

The VOR Weekly News Update from 9/14/12 reports on a national study: Dangerous Caregivers - Agencies place unqualified, possibly criminal caregivers in homes of vulnerable seniors


According to the Northwestern University News Center, July 10, 2012, "A troubling new national study finds many agencies recruit random strangers off Craigslist and place them in the homes of vulnerable elderly people with dementia, don’t do national criminal background checks or drug testing, lie about testing the qualifications of caregivers and don’t require any experience or provide real training."


The study was published in the July 13 issue of the Journal of American Geriatrics Society.

VOR notes that VOR will encourage the study’s authors to consider a similar study of caregivers for people with intellectual and developmental disabilities.

*****************
Here is more from the Northwestern University News Center article by Maria Paul:

The author of the study Lee Lindquist, M.D., an associate professor of medicine at Northwestern University Feinberg School of Medicine and a physician at Northwestern Memorial Hospital is quoted in the article:

“It’s a cauldron of potentially serious problems that could really hurt the senior,” Lindquist said. “These agencies are a largely unregulated industry that is growing rapidly with high need as our population ages. This is big business with potentially large profit margins and lots of people are jumping into it.”

Some of the findings from the study:

• Only 55 percent of the agencies did a federal background check.
• Only one-third of agencies interviewed said they did drug testing - "'Considering that seniors often take pain medications, including narcotics, this is risky,' Lindquist said. 'Some of the paid caregivers may be illicit drug users and could easily use or steal the seniors’ drugs to support their own habits.'"
• Few agencies (only one-third) test for caregiver skill competency - "A common method of assessing skill competencies was 'client feedback,' which was explained as expecting the senior or family member to alert the agency that their caregiver was doing a skill incorrectly."
• Inconsistent supervision of the caregiver.

“'The public should demand higher standards, but in the short term, seniors need to be aware what explicitly to look for when hiring a paid caregiver through an agency,' Lindquist said."

Dr. Lindquist's advice on hiring caregivers:

10 QUESTIONS TO ASK BEFORE HIRING A CAREGIVER

1. How do you recruit caregivers, and what are your hiring requirements?
2. What types of screenings are performed on caregivers before you hire them? Criminal background check—federal or state? Drug screening? Other?
3. Are they certified in CPR or do they have any health-related training?
4. Are the caregivers insured and bonded through your agency?
5. What competencies are expected of the caregiver you send to the home? (These could include lifting and transfers, homemaking skills, personal care skills such as bathing, dressing, toileting, training in behavioral management and cognitive support.)
6. How do you assess what the caregiver is capable of doing?
7. What is your policy on providing a substitute caregiver if a regular caregiver cannot provide the contracted services?
8. If there is dissatisfaction with a particular caregiver, will a substitute be provided?
9. Does the agency provide a supervisor to evaluate the quality of home care on a regular basis? How frequently?
10. Does supervision occur over the telephone, through progress reports or in-person at the home of the older adult?

9/11 - The Bravest by Tom Paxton

Rights Workshop in Howell, Michigan: 10/4/12

A Web site for the Family-to-Family Health Information & Education Center, or F2FHIEC, has loads of information for families with special needs children. According to the Web site, "Our goal is to improve access to quality care and supports for children with special needs in their communities by empowering families." F2FHIEC is funded by the U.S. Department of Health and Human Services, Health Resources and Services Administration, Maternal and Child Health Bureau under the Patient Protection and Affordable Care Act (ACA) of 2010. 

A workshop sponsored by Family-to-Family called "What Are My Rights and Responsibilities and Who Can Help Me Navigate the System?
 " should be helpful to families of adults with disabilities as well as families with special needs children.

This is from the Web site about the workshop in Howell that will be held on October 4, 2012, from 9 a.m. to 3 p.m. at the Livingston ESA, 1425 West Grand River Avenue, Howell, MI :

[The workshop] is for anyone who wants a better understanding of rights, responsibilities and complaint processes including timelines, complaint procedures and what someone could expect during the processes under:

• Children’s Special Health Care Services
• Community Mental Health Services/Hospital Mental Health
• Medicaid
• Special Education Services

Participants will receive resource information for groups and organizations available to assist in navigating systems and protecting a client’s rights. Basic information will be provided on how to gain access to and what makes someone eligible under each system.

Workshop Fee: $10 (Includes Meal)

SBCEUs or SWCEs: $15 [This is for people who need the workshop to count toward certification or accreditation.]

Scholarships: A limited number of scholarships are available for families. Please contact Lisa Cook-Gordon at (800) 359-3722.

Click here to register for the workshop in Howell.
 
Other Training Dates/Times/Locations outside of Southeastern Michigan:

• October 9, 2012 from 9:00 am – 3:00 pm at Eastern Upper Peninsula ISD, 315 Armory Place, Sault Ste. Marie, MI 49783
• October 11, 2012 from 9:00 am – 3:00 pm at Menominee ISD, 1201 41st Avenue, Menominee, MI 49858
• October 29, 2012 from 9:00 am – 3:00 pm at Otsego District Public Library, 219 South Farmer Street, Otsego, MI 49078
• November 12, 2012 from 9:00 am – 3:00 pm at Macomb ISD, Room 104, 44001 Garfield Road, Clinton Township, MI 48038 (586) 228-3321

Autism linked to Immune Disorders

In an opinion piece in The New York Times, 8/25/12, called "An Immune Disorder at the Root of Autism", the author Moises Beasquez-Manoff  discusses research that shows that perhaps one-third of cases of autism are caused by immune dysregulation related to the mother's response to inflammation during pregnancy. Results of a study in Denmark, for instance, indicate that viral infections in the mother during pregnancy increases the chances of having an autistic child by 30% and bacterial infections by 40%.

Infection is unlikely to have caused the increased incidence in cases of autism directly, because we are "more infection free than any other time in history". Instead, the increase parallels other epidemics like asthma and other autoimmune diseases. Autism seems linked to the autoimmune diseases of the mother:
 
"…One large Danish study, which included nearly 700,000 births over a decade, found that a mother’s rheumatoid arthritis, a degenerative disease of the joints, elevated a child’s risk of autism by 80 percent. Her celiac disease, an inflammatory disease prompted by proteins in wheat and other grains, increased it 350 percent. Genetic studies tell a similar tale. Gene variants associated with autoimmune disease — genes of the immune system — also increase the risk of autism, especially when they occur in the mother."
 
Theories to explain the increase in autoimmune diseases include the hygiene hypothesis — that we suffer from "microbial deprivation" and that in cultures with more exposure to microbes and parasites there are fewer autoimmune diseases. Animal studies also support some of the theories proposed in this article.
 
These studies provide a "therapeutic target" for treatment of autism and further research.

The House of Gort: a glimpse into the life of a Michigan family caring for two severely disabled daughters

The House of Gort from Steve Tatzmann on Vimeo.

"The House of Gort" is an exceptionally well-done documentary giving a glimpse into the life of the Gort family. Gwen, the first daughter of Tim and Gina Gort, was born with cerebral palsy. The second, the adorable Violet, has no disabilities. The third daughter, Eliza, was born healthy but suffered a cardiac arrest due to a medical error in the hospital. She has severe cerebral palsy as a result of the brain damage she suffered. [Gwen and Eliza are no less adorable than Violet, but they get starring roles in the video. Violet will have to settle for "best supporting actress" with extra accolades for being adorable.]

The video documents the constant care that the Gorts give their daughters and the consequences of medical errors. Their story was covered in the Grand Rapids News on 8/12/12 in an article by Sue Thoms - Parents sue DeVos Children's Hospital over newborn daughter's brain damage: 'They know they are wrong'.  It was also covered in a Grand Rapids TV news story on 8/12/12.

The Gort's have a blog where you can follow their story.

Abuse and sexual assault of people with DD

This is from the the VOR Weekly News Update for August 17, 2012.  It is about the rape of a developmentally disabled man who lived in a group home in New Mexico.  These are excerpts from an article in the Albuquerque Journal that appeared on February 23, 2010.
 

Larry Selk, who cannot speak or perform daily functions on his own, was raped in 2004 while living in College House, a group home operated by a ResCare's subsidiary in Roswell, New Mexico. The likely perpetrator was a group home employee who had been hastily hired after much of the College House staff was fired for using drugs and there was an urgent need for replacement staff. The man was hired with virtually no background check, which could have discovered problems in his past, and put on the job essentially untrained, according to trial evidence.  

A lawsuit was brought on Selk's behalf by his sister and legal guardian, Rani Rubio, resulted in a jury award of $48 million in punitive damages. Res-Care appealed, resulting in the judge slicing away a significant chunk of a jury's historically high punitive damages award. The punitive damages award was reduced from $48 million to $9.6 million in an order that also denied the company, ResCare Inc., a new trial.  

Second Judicial District Judge Nan Nash found that the punitive damage award was "unreasonable." "While (ResCare's) conduct was reckless, it was not intentional or malicious," Nash wrote in an order filed Friday. Nash left intact the compensatory damages — nearly $1.5 million against ResCare New Mexico and $3.2 million against ResCare Inc.

The ARC of New Mexico filed an Amicus brief in support of punitive awards for abusive providers. (An Amicus brief is a statement submitted by an individual or organization who is not a party to a lawsuit but has been permitted by the court to weigh-in on legal matters related to the case.) Unfortunately, the punitive damages awarded to the disabled man in this case were reduced, but the brief is nevertheless a valuable resource for anyone looking for information on this topic. It is a compendium of sources on abuse, especially sexual assault, on people with disabilities, showing how vulnerable adults are targeted by sexual predators, how crimes against them are under reported and often never reported to law enforcement, and how short staffing and frequent staff turnover in group homes increases the risk of abuse.

These are excerpts from the Amicus Brief:

• p 2: The lives of those with developmental disabilities cannot be improved... unless their lives are first made safe. Unfortunately, the deck is stacked against those with disabilities. Sexual predators see people with disabilities as powerless and vulnerable. Consequently, people with disabilities suffer abuse and rape at much higher rates than the general population.
• p 2: For large-scale providers such as RCI, only substantial punitive damages awards can force them to improve the quality of care they provide to Mr. Selk and others-and thus deter similar injuries in the future.
• p 11: Researchers recognize that high turnover among the staff increases the risk of sexual assault...When service providers fail to provide adequate staff and supervision, it also increases the risk of sexual violence.
• p 12: If a provider is on notice of but fails to correct systemic problems, this demonstrates a fundamental lack of respect for the rights of its residents.
• p14: While the estimates of sexual abuse of developmentally disabled people are staggering, it may only be the tip of the iceberg. As one New Mexico survey found, "[r]ape is significantly under-reported to law enforcement…"
• p 15: … the problem is probably bigger than suspected, the victims even more numerous. And yet, in part because the crimes are not reported, offenders go unpunished, free to commit more crimes-while service providers entrusted with the individuals' care and safety know little risk exists of being held accountable even though their own failures provided opportunity for the crime.
• p 15: Even when victims or their loved ones report sexual assault, the perpetrator usually is not punished.
• p 15 - 16: When society's response to sexual assault is devoid of serious penalties, it increases the perception that people with developmental disabilities are unequal in the eyes of the law.
• p 16: Civil lawsuits against service providers who injure their residents, rather than care for them, play a crucial role in ensuring equal rights and the safety of individuals with disabilities. If we can encourage these providers to fulfill their duty to their residents--or at least deter them from breaching that duty-sexual violence against vulnerable individuals will be reduced.