Health hazards in caregiving

An article by Shaun Heasley at Disability Scoop, "Disability Caregiving Can Be Health Hazard, Study Finds", 12/17/12, summarizes a recent study that concludes that "parents of children with developmental disabilities are experiencing health consequences stemming from their caregiving responsibilities…" I could have told you this from personal experience, but it is important that health problems in caregivers are taken seriously and studied scientifically.
 
The study by Stephen Gallagher and Jenny Whiteley was published in Research in Developmental Disabilities, November-December 2012. The abstract describes the study:  "…Thirty-five parents of children with developmental disability and thirty controls completed standard measures of perceived stress, child challenging behaviours and social support and wore an ambulatory blood pressure (BP) monitor throughout the day, for one day." Most of the children with disabilities had autism or Down's syndrome. 

I would have guessed that the higher blood pressure was due to added stress and "child challenging behaviours", but the researchers found that the increase was mostly associated with the parents of disabled children having fewer social supports.

It is amazing to me that this is the first study to compare blood pressure between these two groups of parents.

The many comments from caregivers left on the Disability Scoop Web site about this article are well worth reading.

Update on important Medicare settlement

This is an update from my blogpost of January 18th, 2013. The final approval of the settlement requires that skilled nursing and therapy services necessary to maintain a person's condition be covered by Medicare based on need rather on improvement in the benficiary's condition.

From the Center for Medicare Advocacy (CMA):

"The Center for Medicare Advocacy, along with its co-counsel Vermont Legal Aid are pleased that the Settlement in the Medicare Improvement Standard case, Jimmo v. Sebelius,[1] was approved on January 24, 2013 during a scheduled fairness hearing, marking a critical step forward for thousands of beneficiaries nationwide. "

"Undersung": Documentary on caregivers of disabled family members

 From the Undersung Web site:

"MacArthur Fellow and poet Heather McHugh, together with filmmaker Adam Larsen, are collaborating to create UNDERSUNG, a feature-length documentary celebrating and giving voice to one of the most under-sung of human communities: long-term full-time caregivers of disabled family members."

Here is the trailer for the documentary project:

Important Medicare case settlement awaits final approval

UPDATE from the Center for Medicare Advocacy: "The Center for Medicare Advocacy, along with its co-counsel Vermont Legal Aid are pleased that the Settlement in the Medicare Improvement Standard case, Jimmo v. Sebelius,[1] was approved on January 24, 2013 during a scheduled fairness hearing, marking a critical step forward for thousands of beneficiaries nationwide. "
 
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[Most low-income adults who are developmentally disabled are eligible for Medicaid when they turn 18. They may also become eligible for Medicare if a parent who has been paying into the Social Security System either dies, retires, or becomes disabled.] 
 
An agreement has been reached in a class action lawsuit that is especially important to people covered by Medicare who have chronic or debilitating medical conditions from which they may not recover or improve. In the final stage of the settlement process, a Fairness Hearing will be held on January 24, 2013 to determine whether the agreement is "fair, reasonable, and adequate", after which a final judgment may be issued to approve the settlement.

In  Jimmo v. Sebelius, No. 11-cv-17 (D.Vt.), the plaintiffs contend that Medicare has for years illegally restricted coverage of skilled nursing and therapy services  only to beneficiaries who showed improvement. Beneficiaries who needed services to maintain their status or to slow deterioration were denied services on the basis that they would not improve. A settlement that was signed by the Chief Judge for the District of Vermont on November 20, 2012 would overturn the "improvement standard" and require that skilled nursing and therapy services necessary to maintain a person's condition can be covered by Medicare.

[Visit the Web site for Center for Medicare Advocacy, Inc.  for the most complete information on the case that includes Frequently Asked Questions, personal stories, and links to important documents.]

The federal Centers for Medicare and Medicaid Services (CMS) has agreed to revise the Medicare Benefit Policy Manual to include new policy provisions. Skilled Nursing Facilities, Home Health Services, and Outpatient Therapy Services, including outpatient physical and occupational therapy and speech pathology services, will be covered "to perform a maintenance program [that] does not turn on the presence or absence of a beneficiary's potential for improvement from the therapy, but rather on the beneficiary's need for skilled care."

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The Center for Medicare Advocacy, Inc. asks and answers an important question:

Q:  Will the Jimmo Settlement Agreement cost Medicare too much?

A:   The Settlement only provides Medicare coverage for services that the law has always covered, and for which people pay into Medicare to receive. The skilled maintenance nursing and therapy that is at the heart of the Settlement is usually low-cost, low-tech care that will often prevent the individual from declining further and requiring more intense, more expensive care.  In addition to being the right and legal thing to do, covering services such as those included in the Settlement Agreement may actually be more cost-effective than failing to provide these services.

A recent study regarding a Veterans Administration care model makes this point. In the VA program primary care teams are provided to assist the highest cost patients with multiple chronic diseases in their homes. The program operates in more than 250 locations, has an average daily census of more than 27,000 patients and has shown savings of 24% where costs are the highest. It has reduced hospitalizations by over 60% and has reduced nursing home use by over 80%. Many similar programs show savings on the highest cost patients of 50% or more, while showing very high patient/caregiver satisfaction.

Latest Revisions to the Michigan Dual Eligibles Plan

Jennie and friends

The Michigan Association of Community Mental Health Boards (MACMHB) and the Michigan Association of Hospital Plans (MAHP) issued a joint letter to members on changes to the state plan to integrate the care of people eligible for both Medicare and Medicaid. In negotiations with the Centers for Medicare and Medicaid Services (CMS), the federal agency that oversees and regulates Medicare and Medicaid, a preliminary agreement has been worked out with the state. 

The Dual Eligibles plan will be scaled back to a 3-year demonstration project to be implemented in selected regions of the state.  Michigan and the CMS will formally conclude negotiations with a Memorandum of Understanding (MOU) that will be the basis for this implementation.

Neither the number nor location of regions has yet been decided. The state has recently approved a new regional configuration for Pre-Paid Inpatient Health Plans (PIHPs), reducing the number of PIHPs in the state from 18 to 10. A PIHP is the administrative entity over local Community Mental Health agencies. Within each selected region, no sub-populations or sets of services will be excluded from the plan.
   
According to the letter:

CMS will require three-way contracts between the federal government, the state and management entities selected to participate in the project. 

• Management entities will include integrated care organizations (ICOs) and prepaid inpatient health plans (PIHPs). 
• In the proposed plan, ICOs will cover physical health and long term care services, including but not limited to, institutional and community based long term services and supports and pharmacy.
• In the proposed plan, PIHPs will cover behavioral health and habilitative services, including developmental disabilities, mental illness, or substance abuse problems.

Here is the map of these new regions. The Integrated Care Organizations will cover the same regions as the PIHPs. (The CMH Partnership of Southeast Michigan will remain intact and continue to include Washtenaw, Livingston, Monroe, and Lenawee Counties). "Once selected, each region and contracted entities, (ICO/PIHPs) will be maintained for a total of three years to accommodate evaluation requirements."

In addition:

• Eligible individuals will be automatically enrolled into the integrated system, but can opt out prior to enrollment as well as after beginning to receive services.
• Michigan is continuing its process to include stakeholder input on an ongoing basis throughout the course of the demonstration.
• Subject to CMS approval, the program will begin providing coverage in January of 2014.

Other details in the letter and documents on the Michigan Integrated Care Web site include schedules for Integrated Care Organizations to apply for contracts. Here is more information and background on the Dual Eligibles Plan. Stay tuned for further developments.

Winter Events in Washtenaw County 2013

Special  Olympics Snow Ball

Friday, January 11, 2013
7 - 10 p.m.
The Michigan League Ballroom at the University of MIchigan
911 North University Ave.
Ann Arbor, MI 48109

• Dress is semi-formal
• Tickets are $5 pre-sale or $7 at the door
• No additional charge for parents/chaperones
• Contact your teacher or coach to purchase tickets

Hosted by University of Michigan pre-health organizations, Alpha Epsilon Delta and Medical Educational Service Opportunities


St. Joe's 5th Annual Sock Hop
Hosted by Joe's Club 5th and 6th grad youth group

Friday, February 8th from 7 - 8:30 p.m.
St. Joseph Parish Center
3430 Dover Dexter, MI 48130
(Parish Center is behind the Village church)
For our friends with Developmental disabilities, ages 16 and over (and a caregiver, please)
Cost: $5 per guest (no charge for caregivers)

Please feel free to call us with any questions!
Contact Liz Aslin at 734-904-4294 or Laura McKenzie at 734-276-7454

Elvis will be in the house again to entertain us with his music of the 50's.
Games and light refreshments available

Dress for the occasion (saddle shoes, jeans, t-shirts, and poodle skirts) or come as you are!

Winter Events at Ann Arbor CIL

The Ann Arbor Center for Independent Living is a welcoming place, especially for people with physical and developmental disabilities. Call the contact numbers below if you have questions.
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Hello everyone,
                Happy new year to all!  The Ann Arbor CIL pleased to announce our upcoming events in January and February.  Please note that some events are exclusively for youth (ages 14 to 26) while others are open to all ages.  We hope you find something of interest look forward to seeing you soon!  Please contact Mary or Anna about signing up for events.

Wii Game Night For All

Join your friends on Wednesday, January 16th from 6-8pm at the Ann Arbor CIL for a video game challenge.  Play popular Wii games such as bowling, golf, baseball, and much more.  If video games aren’t your thing there will be plenty of board games and cards available as well. This event is open to all ages and feel free to bring a friend. Snacks will be provided. RSVP is appreciated.  Contact Anna or Mary with any questions and RSVP.
Mary 734-971-0277 Ex: 22
mary@aacil.org
Anna 734-971-0277 Ex: 17
anna@aacil.org

Motley Crew Party Saturday, January  26th   from 1:00-3:00pm

Join your friends at the Ann Arbor CIL and our wonderful Motley Crew volunteers for some fun and games! The theme will be a surprise! This  event is open to youth ages 14-26. RSVP will also be appreciated.

“Sweet” Valentine Social

Do you love sweets? If so this is an event for you! Join your friends at the Ann Arbor CIL for a sugar filled evening.  You’ll learn how to make assorted candies and cookies. You will have a treat bag to take home with you as well.  We will also have Valentine’s themed games and you will have an opportunity to make a Valentine for the special someone in your life. The event will take place on Monday,  February 11th from 5:30-7:00.  RSVP is appreciated. The event is open to anyone ages 14-26.

Family Casino Night

Have you ever dreamed of stepping inside a casino? Well here’s your chance. You are cordially invited to Ann Arbor CIL’s first Youth Casino Night. The night will be filled with casino night fun including games, music, treats and more. Join your friends on Monday, February 25th from 5:30-7:00. The event is open to all ages and abilities. Contact Anna with your RSVP.
734-971-0277 Ex:17
 

Disability Advocates: How much involvement in a political campaign is too much?

This is old news, but I think it is instructive to look back at the 2012 political campaign for Proposal 4, a ballot proposal to amend the Michigan Constitution primarily to assure continued union representation of organized Home Help Care workers by the Service Employees International Union (SEIU). These workers are paid from Medicaid funds that seniors and people with disabilities can use to assist them with  personal care and household chores.

Both Proposal 4 and Proposal 2, another proposal to write collective bargaining rights into the  Michigan Constitution, were defeated. Following their defeat the Michigan lame-duck legislature passed a law that makes Michigan a "Right to Work" state, a devastating blow to labor unions. These controversial union issues became entangled with the Home Help program that almost everyone supports as a way to help seniors and people with disabilities stay in their own homes. The Home Help program has been around for more than 25 years and its continued existence was not threatened by either the passage or defeat of Proposal 4.

[If you want to read more about unions in Michigan, here is a pro-union article, "This is not Wisconsin. It's Worse.", from the American Prospect, 12/10/12, by Rich Yeselson. It covers Michigan labor history, the United Auto Workers, and how unions have in many respects been weakened by past successes.]

The support by seniors and disability advocates for Proposal 4 focused on part of the proposal that would have maintained the MIchigan Quality Community Care Council (MQCCC) under a new name, the Michigan Home Quality Care Council (MHQCC).  The MHQCC, an organization of advocates for seniors and people with disabilities with representation from the MIchigan Department of Community Health (MDCH), would have continued to represent the employers of Home Help workers, seniors and disabled people in the Home Help program, in bargaining with the workers through the SEIU. The MHQCC would also have continued to operate a registry of Home Help workers who had passed background checks and could receive training to improve their job skills. State funding from the MDCH for the MQCCC had been about $1.1 million per year until the legislature defunded the organization in October 2011. Since then it had received help in maintaining the registry from advocacy groups and the SEIU.

Senior and disability advocates were the face of the pro-Proposition 4 campaign. Most, if not all, of the advertising for it emphasized safety through the maintenance of the registry of home help workers. The advertising did not mention, however, that 75% of Home Help workers are family members or friends of the senior or disabled person, unlikely to use the registry, and not subject to background checks. Nor was there much mention of the more controversial union issue.

According to the 12/5/12 updates on the funding of the pro-Proposal 4 campaign called Citizens for Affordable Quality Home Care, funding came almost entirely from Home Care First, Inc. Home Care First got its money, $9,360,000, entirely from SEIU affiliates. The treasurer of Citizens for Affordable Quality Home Care was Dohn Hoyle, the Executive Director of the ARC Michigan. The treasurer of Home Care First, Inc., was Norm Delisle, the Executive Director of the Michigan Disability Rights Coalition.

Here is the campaign statement details for Citizens for Affordable Quality Home Care. This is the campaign statement details for Home Care First, Inc.

The financial stake in the pro-Proposal 4 campaign, was significant: the SEIU collected about $6 million per year in dues and fees from Home Help workers and the Michigan Home Quality Care Council hoped for renewed funding from the state that had been about $1.1 million annually.

One of the primary functions of advocates and their organizations should be to protect the rights of seniors and disabled people and the services they need to survive. To do this successfully, however, they need to maintain their independence and avoid conflicts of interest. In this convoluted campaign to amend the Michigan Constitution, advocates allied themselves with a labor union while simultaneously representing seniors and people with disabilities in collective bargaining with the union. The executive directors of two influential disability organizations were treasurers of the $9.3 million pro-Proposition 4 campaign and the committee that financed it with money entirely from union affilliates.

Seniors and people with disabilities and their advocates played a prominent role in promoting the uncontroversial aspects of the ballot proposal without acknowledging the more controversial union issues. There is a lot to be said for the quality and reliability of unionized workers who are adequately paid and trained and their role in improving the quality of care for people with disabilities, but, as far as I know, these arguments were not made in promoting the ballot proposal. Even if Proposal 4 had passed, the union and the advocacy organization representing seniors and people with disabilities were ultimately limited in their ability to improve the standing of Home Help workers. Although these workers were technically state employees, they received none of the benefits of most state employees and bargaining for better wages depended mostly on convincing legislators to provide adequate funding for the Home Help program.

Fortunately, the Home Help program is still intact and available for those who qualify for it. Beyond that, the chief beneficiaries of the ill-fated Proposal 4 campaign were the PR firms and the media outlets that ran advertising for it. Seniors and people with disabilities are probably no worse off, but advocates who were so intimately involved in this political campaign seemed unable to draw the line between themselves and outside interests and they probably undermined their credibility as advocates.

More on Proposition 4 from the DD News Blog