Washtenaw County: Town Hall meeting on mental health services for DD

from the Washtenaw County Community Health Organization (WCHO):

Community Supports and Treatment Services (CSTS) Town Hall

Tuesday, April 14, 2015
 
5:30 p.m. to 6:30 p.m.

Join us for a presentation and open discussion on potential changes to your Community Living Support services (staffing in your home).

United Way Building
2305 Platt Rd.
(South of the Platt Rd. intersection with Washtenaw Ave.)
Ann Arbor, MI 48104

View map on United Way Website for location.

For additional information, call 877-779-9707

Home Care for people with disabilities : How direct care wages negatively affect quality of care

From the PHI Chart Gallery

PHI (Paraprofessional Healthcare Institute) issued a report in February 2015 showing how the home care workforce is negatively affected by poverty-level wages, thereby degrading the quality of care for millions of elders and people with disabilities.

This is an especially timely topic with the federal government and federally-funded advocacy groups for people with developmental disabilities aggressively pressuring states to close institutions and other types of congregate care and services, often against the wishes of the people receiving this care and their families. The new rule for Home and Community Based Services (HCBS) from CMS, the federal agency that regulates Medicaid and Medicare, as it is currently written, will inevitably lead to people with DD moving to less regulated settings, cared for by workers who are paid less with fewer benefits or other incentives to remain in their jobs.

The PHI Website explains the effect of low wages on care quality as reported in “Paying the Price - How Poverty Wages Undermine Home Care in America”: 

Poor wages and nonexistent benefits are tied to high turnover rates within the home care workforce, Paying the Price reports. Roughly one out of every two home care workers leaves her job every year.

High turnover correlates with poorer care outcomes for elders and people with disabilities, who come to rely on home care workers to ensure their quality of life.

"When people can't find the care they need for the family members they love, it is a genuine family crisis," the report says. "The outsized growth in our population of elders is going to make this problem far worse in the decades to come."

The report notes that demand for home care jobs is expected to grow by approximately 50 percent between the years 2012 and 2022, a rate five times higher than overall job growth during that span.

The wages of people working in the three main categories of direct care (personal care aides, home health aides, and nursing assistants) have fallen from 2003 to 2013 overall with only a small number of states showing an increase in wages.

This is from a PBS Newshour Special, 3/16/15:

                    
 

Michigan DD Council "Community Conversation" : Statewide meetings

The Michigan Developmental Disabilities Council (of which I am a member) is sponsoring state-wide meetings to gather information for its next 5-year state plan. They need to hear from you.

For the uninitiated, the Michigan Developmental Disabilities Council is a program funded by The federal Developmental Disabilities Assistance and Bill of Rights Act (also known as The DD Act). Every state has a DD Council that is allocated federal funding to pass on to non-profit organizations and agencies to further the goals described in the DD Act:

...to support State Councils on Developmental Disabilities ...in each State to—
    1.    engage in advocacy, capacity building, and systemic change activities that are consistent with the purpose described in section 101(b) and the policy described in section 101(c); and
    2.    contribute to a coordinated, consumer- and family-centered, consumer- and family-directed, comprehensive system of community services, individualized supports, and other forms of assistance that enable individuals with developmental disabilities to exercise self-determination, be independent, be productive, and be integrated and included in all facets of community life.

Members are appointed by the Governor. 

One thing that is important to understand about DD Councils is that they do not fund direct services to people with developmental disabilities, although people with DD may benefit indirectly from DD Act funded programs. The Michigan DD Council provides grants to nonprofit organizations, agencies, and other groups and is a major source of funding for advocacy organizations such as the ARC Michigan. One area of comment that is not often mentioned but that I think is very important is whether the groups that receive funding are acting in your best interests.

For  reference, this is the current Michigan DD Council 5-year plan for 2012-2016. What would you change, add, or subtract from the current plan? 

This is the notice for Community Conversation in Detroit. Other meetings are linked below.

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Michigan Developmental Disabilities Council
Community Conversation
Friday, April 10, 2015
9:30am-2:00pm
Greater Grace Temple
23500 W Seven Mile Rd.
Detroit, MI 48219 

Lunch will be provided
 
The DD Council wants to hear from YOU!
 
Are you a person with a developmental disability, a family member of a person with a developmental disability, or an advocate for persons with disabilities?
 
The Michigan Developmental Disabilities Council is gathering information for its next 5-year state plan. This is your chance to tell us what’s important to you and what you want the DD Council to do about it. Join us to share your story, explore the challenges that effect your life and talk about the issues that are important to you. 

Advanced Registration is Required 

To register please click here
 
Registration Deadline:
Monday, March 30, 2015
 
Organized by the Washtenaw Association for Community Advocacy
For more information or help registering contact: Jen Gossett at 734-662-1256 ext. 206 or Jgossett@washtenawaca.org.

Link to other meeting announcements in Gaylord, Plainwell, Lansing, and Marquette here . These announcments include additional links for registration. 

VA plans to close facilities for DD as numbers on waiting list soar

An editorial from the Lynchburg Virginia News Advance questions the wisdom of the state legislature failing to address the concerns of parents and guardians of Virginia’s four remaining residential “training centers” [Intermediate Care Facilities for Individuals with Intellectual Disabilities or ICFs/IID].

“The training center closings result from a consent decree Virginia, under the administration of former Gov. Bob McDonnell, entered into with the U.S. Justice Department, which has been pushing states to care for its disabled citizens in community-based group homes, rather than in residential hospital-type settings. In the 2012 settlement, it is important to note that the Justice Department did not require the closing of Virginia’s four training centers; rather the state chose to go that route to come up with the money for group homes.” [emphasis added]

Most of the remaining residents in the facilities have the most intense needs and include people who have profound physical, mental, and behavioral disabilities. Under the terms of the Department of Justice settlement, these people would be moved to community settings where they would theoretically receive the exact level of care that they now receive  at less cost to the state:

“Except — and here’s the scary part for guardians and families — the needed group home infrastructure in the commonwealth simply does not exist. Currently, there are thousands of people on the state’s waiting list for a group home spot. And that waiting list has only grown in the three years since the McDonnell administration decided to embark on the closure of the training centers, a path chosen because Richmond didn’t want to spend any additional money to build out the group home network before the training centers would close.” [emphasis added]

The editorial board asks, “To all its foes — from the Assembly Democrats and Republicans to the McAuliffe administration, we ask this question: Are you too tightfisted to care properly for the least among us?…Time and again, though, the answer has been yes.”

2015 VOR Annual Conference Featured Speakers: Terry Farmer and Lois Sheaffer

VOR is a national organization that supports individuals with intellectual disabilities (IDD) and their families by advocating for a full range of residential and service options to meet their diverse needs. VOR will be holding its Annual Conference on Sunday, June 7, 2015 in Washington, D.C. See you there!
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(from the VOR Weekly Update)

Terry R. Farmer

Terry R. Farmer, the CEO of ACCSESS, a national organization representing “more than 1,200 disability service providers across the country as the Voice of Disability Service Providers,” will be a featured speaker at VOR’s Annual Conference on Sunday, June 7, 2015 in Washington, D.C.

Terry will speak on “National Disability Policy – Initiatives Impacting Employment Options for Individuals with Significant Disabilities.”

Emerging public policy is affecting the delivery of services and supports currently available to individuals with significant disabilities.  Federal and state programs and community providers are transforming their systems and operations in response to new laws, regulations and administrative actions.  Conference participants will learn how these forces are affecting employment programs for individuals with significant disabilities, and discuss strategies for engaging policy makers in a rapidly changing environment.

About Terry: Throughout his career, Terry has been affiliated with several state and national professional and trade organizations and has been recognized for his academic work and service to the field. His work experience includes direct service provision, behavior analysis (State of Florida Certified), program administration, policy analysis and executive level leadership in the fields of disabilities and human services.  He has administered programs of long-term services and supports, diagnosis and evaluation, community placement of people with severe developmental disabilities and mental illness, and issue advocacy. From 1991-2008, Terry served as the President/CEO of the Florida Association of Rehabilitation Facilities. In 2009, he co-founded Combat Injuries Project, Inc. with a group of veterans, professionals and business executives to serve veterans, especially those with service-connected disabilities, and their families.  He was appointed ACCSES CEO in April, 2011. 

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Lois Sheaffer

Lois Sheaffer will be presenting “Everyone Needs a little REST!” at VOR’s 2015 Annual Conference on Sunday, June 7, 2015 in Washington, D.C.
 
Ms. Sheaffer is the Founder, National Director and Master Trainer of Respite Education & Support Tools (REST). She also serves as the Director of Government Relations and Community Support for Marklund, a Medicaid Intermediate Care Facility for Individuals with Intellectual Disabilities (ICF/IID) in Illinois.
 
REST is a nationally-recognized train-the-trainer program that equips volunteers with the skills needed to support caregivers in their community through respite.
 
Ms. Sheaffer, a Certified Therapeutic Recreation Specialist, began her career in respite working with individuals who have special needs. As the coordinator of an in-home community respite program she hired, trained, and matched workers with families. She later became active in the Illinois Respite Coalition and served as President of the Coalition for five years. She continues to stay well connected with ARCH [Access to Respite Care and Help] and the National Respite Coalition.
 
Most recently, using the national respite guidelines, she developed REST, a respite training program for volunteers. 

In addition, Ms. Sheaffer, has worked in a variety of settings, including geriatrics, skilled care, and pediatric residential facilities for children and adults with Developmental Disabilities. Lois is a registered lobbyist and currently serves as the Director of Government Relations and Community Support for Marklund.
 
Please plan to attend VOR's Annual Conference and hear Ms. Sheaffer's presentation. Won't you join us? Registration is now open.
 
For complete conference details and a registration form, visit VOR’s Events link on our website.

Texas: When commuity care fails a person with severe DD

The Texas Fort Worth Star-Telegram ran a two-part series by Deanna Boyd investigating the tragic 2013 death of a 39-year-old woman with severe multiple disabilities who was receiving Medicaid-funded Home and Community Based services while being cared for by her sister and father:

• "Failing Marci: A disabled woman’s story of triumph and tragedy", 2/27/15
• "Failing Marci: Investigation raises questions about care and oversight for disabled woman", 3/1/15

Even with her multiple severe disabilities, Marci Garvin lived at home, attended a regular school, and later worked in paid supported employment. Her mother was a proponent of full inclusion and Marci’s story was an inspiration to others that someone with disabilities as severe as hers can live a full life in the community and work at a paying job. How, then, did Marci Garvin end up in the hospital, two days before she died, with “more than 20 major bedsores…covered in urine, feces and bugs..." at almost half her normal weight?

According to the Fort Worth Star-Telegram, “Marci spent her last years under the primary care of an increasingly overwhelmed sister battling her own mental illness while also caring for a special-needs daughter and an ailing mother…” Marci's sister, Tabby Martinjak, admitted to investigators that she was being treated “for...hoarding, as well as other mental illness, including bipolar disorder, manic depression, post-traumatic stress disorder and obsessive-compulsive disorder.”

Also, according the news reports, “The [Texas] Department of Disability and Aging (DADS) contracts with both public and private HCS [Home and Community-Based Services] providers, reimbursing them with Medicaid dollars. As of December, 21,676 clients were receiving HCS services in Texas with more than 72,000 on a waiting or 'interest' list….Marci was enrolled in the program’s foster care option, allowing her to receive services from her HCS provider while living at home. Her mother, and later Martinjak, were paid for being Marci’s primary caregiver, receiving about $3,000 a month in Medicaid funding at the time of the Marci’s death.”

Investigators found a lack of oversight in Marci’s tragic death: 

• " Employees of the two service providers and MHMR knew that Martinjak was a hoarder whose boxes of possessions and clutter reached from floor to ceiling of the family’s southwest Fort Worth home, but they did little to address it despite the fire and safety risk it posed. Martinjak repeatedly avoided home visits and inspections, yet was allowed to continue her paid role as foster care provider for her sister.
• "Dianne Salas, a care coordinator with Southern Concepts at the time of Marci’s death, was required to assess Marci’s home yearly but hadn’t been inside the Garvins’ house since 2010. Still, Salas filled out home assessments in 2011 and 2012, stating that the home was safe for Marci.
• "Marci had not seen her primary care doctor since 2010 despite contrary statements from her sister and had not received a required nursing assessment from her service provider."

Although Home and Community-Based Services are invaluable to families who choose to keep disabled family members at home and engaged in their communities, a lack of oversight, unrealistic demands on caregivers, and neglect can lead to tragic events such as this. The reporter Deanna Boyd,from the Fort Worth Star-Telegram, has done an excellent job of covering this important story.

Texas: Home in a caring community

From the Coalition for Community Choice Blog - "When Mom’s Plans Aren’t Enough", 12/9/14

Pam’s mother promised that Pam would be able to stay in her family home and continue her existing lifestyle even when her mother was no longer around. Upon her mother’s death, Pam was fortunate to have siblings that were prepared to interview, hire, and manage the direct support staff Pam needed. The goal for Pam was for her to live as independently as possible in her family home with her beloved dog, “Rachel”.

Unfortunately, things did not go as Pam’s mother may have wanted. Although Pam was able to stay in her family home with 24/7 support staff, something was missing. The staff cared for Pam physically, however her greater potential was not being realized within the daily monotony of television programming and routine meals.

In facing the difficult decision as to whether or not to go against her mother’s wishes, Jan explored alternative living situations for her sister. She discovered Live Oak Living, an intentional community where 16 residents with traumatic brain injuries or developmental disabilities live. When Pam expressed anxiety towards her life ahead at Live Oak, the community made special accommodations to ease her transition including constructing a fenced in yard for “Rachel”. Pam moved into her own studio to start her new life in a community that embraces individual choice and is encultured with person-centered support. 

Now, Pam can stroll over to a friends house, attend classes if she desires, or simply go for a walk with “Rachel” to visit her new equine friends. Pam described a shopping trip with her sister, and though she missed going to see Captain America, she returned just in time for “Girls Night” that evening!

After the interview, one of the staff members suggested that Pam put in an application to work at the bakery down the street. In noting Pam’s initial reluctance, the staff reminded her of her delicious cheese pimento, which was just enough moral support to help Pam consider a new employment possibility.

More links:

The Coalition for Community Choice

Madison House Autism Foundation

Use it or lose it: Allowing more community use of a facility for DD is less costly than closing it down

The argument being made to close Southbury Training School in Connecticut, an Intermediate Care Facility for Individuals with Intellectual Disabilities (ICF/IID), is the same faulty argument being made in Michigan to justify closing programs that provide residential, employment, and day program options in congregate settings. It goes like this: When compared to the average cost of serving individuals in the community, congregate settings are far too expensive — close them down and there will be plenty of money left over to serve more people with disabilities!

Often overlooked in this calculation, is the fact that the people served in licensed congregate settings generally have more severe disabilities and need more specialized services than people living at home or in the so-called community. When people with highly specialized needs are served in community settings, it can be just as costly if not more costly than in group settings. In reality, costs savings often come as a price to people with disabilities and their families in the form of fewer services of lower quality.  

Comparing the average cost of supporting people who require less intensive supports in the community to the cost of supporting distinctly non-average individuals who need more intensive supports and services is not a fair or accurate comparison. While costs should not be the only consideration for where and how a person with DD is served, it is inevitably raised as a factor by disability advocates who try to justify eliminating programs that do not conform to their ideology of full inclusion for every person with a disability. 

The following are excerpts from an editorial that appeared in the Hartford Courant on 2/20/15: “Using Southbury Training School Is Only Real Solution” by Martha Dwyer and Tamie Hopp. Martha Dwyer is president of the nonprofit Home and School Association of the Southbury Training School. Tamie Hopp is director of government relations and advocacy for VOR, a national nonprofit that represents primarily individuals with intellectual disabilities and their families/guardians.

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There is a crisis in the care of people with intellectual and developmental disabilities in Connecticut. At least 2,000 individuals who are living with their families are on the waiting list for placement in a residence, many for more than 20 years and many in desperate situations. [emphasis added] 

Many people believe that closing Southbury Training School and the state regional centers and moving residents to four-person (or smaller) group homes will free up funds to enable individuals on the waiting list to be placed in residences. This is incorrect and will create more problems than it will solve...

The numbers don't add up. There are approximately 313 individuals at Southbury and 191 at regional centers. At least 125 new group homes would have to be renovated and staffed to provide highly specialized services for these individuals. Moving a resident of Southbury to the community generally takes one to two years, and this during periods when only a few residents are moved at a time. To move 500 people would take years and a huge amount of money. Residents at Southbury and regional centers have been given priority over people on the waiting list for years and that would have to continue indefinitely to close Southbury and the regional centers. That would help no one on the waiting list for many years.

…Seventy-eight percent of Southbury residents have severe or profound intellectual disabilities, the vast majority have significant functional disabilities (a majority need help walking, eating, toileting, or dressing), and 83 percent have additional disabilities such as cerebral palsy, blindness, deafness, epilepsy or mental illness...they do not live in a segregated environment but interact on a frequent basis, to the extent they physically and intellectually can, with people in the community. They will be moved from their familiar surroundings and they will be exposed to a smaller group of unfamiliar people...

There is a better, more comprehensive solution that no one is talking about: Open Southbury and the regional centers for future placements and use Southbury for outpatient services and skilled nursing care for aged members of this population and respite services for families. Repairing and reopening cottages on the Southbury campus and using available regional center beds would be less expensive and faster than seeking homes in the community for individuals on the waiting list.
 
… The state should expand the sophisticated medical, dental and psychiatric facilities already in use at Southbury and make them available to people on the waiting list and in the community. It would make more sense to use the facilities the state already owns, and thereby bring down individual costs, than to waste this beautiful resource. We believe this would save money and improve service throughout the state.

...Southbury is a ready, compassionate solution centered on meeting people's true needs, not a numbers game that simply does not add up.

Read the complete editorial here....