Tuesday, April 14, 2015

Washtenaw County, MI : CMH to announce rate decrease for Community Living Services

Update 4/16/15: About 100 people attended the WCHO/CSTS meeting on Tuesday, April 14, 2015 to discuss Community Living Services and potential cuts in services when they are found on further evaluation to not meet "medical necessity" criteria. The above letter was for people who hire providers through "Self-determination" arrangements. Although this was not the main subject of the meeting, it did come up. There will be future meetings on the "Self-determination" decision and on other Community Living Services. Stay tuned.

The Washtenaw Community Health Organization and Community Supports and Treatment Services are holding a meeting tonight to discuss plans affecting Community Living Supports for people with disabilities. These include staffing for people in their own homes.

According to a letter sent to consumers (individuals with disabilities and their families who receive services), the rate of pay for these direct care workers will be reduced to $13.88 per hour, which includes worker’s compensation, transportation, community participation, taxes, and training. The letter says that “While this is not a reduction in your current level of services, it may reduce the amount you can pay staff.” WCHO also encourages consumers to meet with their clinical teams and consider options, “including the option to use one of our contracted providers for CLS services”.

The change will go into effect on May 15, 2015.

People whose services are funded through Medicaid Waivers, especially those with exceptionally high needs, find themselves extremely limited by the allowable amount of funding available to pay service providers. The higher the needs, the more skilled and reliable direct care workers need to be to fulfill those needs. Reducing the hourly wage of workers who, if they do their jobs well, take on tremendous responsibility to do difficult work leads to diminishing returns: a high turnover rate, poorer care, and sometimes no care at all.

The change in rate is justified as “necessary to ensure that Washtenaw County’s rate is the same as our regional partners and to ensure that we are being fiscally responsible.” Another way of looking at it is that both these things might be accomplished by raising the rate of our regional partners and ensuring a more stable and reliable workforce all the way around.

Friday, April 10, 2015

Groundbreaking Survey of Families of Adults with DD

“….Dispels myths, shows institutional homes are part of our communities”

I’m not often quoted in press releases, but this has to do with a committee that I chair for VOR. We conducted a survey that gathered perspectives of families of individuals with profound disabilities who receive care in Medicaid Intermediate Care Facilities (ICFs) or in home and community-based settings.

VOR is a national nonprofit organization that advocates for individuals with intellectual and developmental disabilities, including autism. We are the only national organization that advocates for a full range of residential and service options for people with intellectual and developmental disabilities, including own home, community-based, and larger settings, such as licensed Intermediate Care Facilities for Individuals with Intellectual Disabilities (ICFs/IID).

Here is the press release for the survey report.

VOR represents a large number of families whose family members have severe to profound disabilities that are complicated by the presence of multiple disabilities, medical fragility, or severe behavioral challenges. Many, but not all, live in institutional settings, and have needs that are often overwhelming for families and smaller community settings such as group homes. We were able to gather responses from families and guardians in thirty states, representing 117 Intermediate Care Facilities (ICF/IID) and compare them with responses from families and guardians of people who lived in smaller community homes. 

Individuals who live in Medicaid-funded ICFs/IDD receive an institutional level of care. As a bundled service program, Medicaid ICF settings provide a set of services according to a standardized set of guidelines across the nation. The “Social Security Act created this benefit to fund ‘institutions’ (4 or more residents) for individuals with intellectual disabilities, and specifies that these institutions must provide ‘active treatment,’ as defined by the Secretary” [Centers for Medicare & Medicaid Services(CMS)].

The conclusions we reached from the survey results were:

  • The responses to the ICF survey revealed a sharp contrast between common misperceptions of “institutions” as segregating and isolating environments and the perceptions of family members and guardians of individuals living in these settings. 
  • Based on their own experiences, ICF respondents indicated a high level of satisfaction with their individuals’ ICF homes, staff competency, access to services and community integration. 
  • Non-ICF respondents expressed general satisfaction in measures relating to integration, access to services, staff competency, and vocational opportunities but were evenly divided over whether their individuals would do poorly or well in an ICF as an alternative setting. ICF respondents by a strong majority believed that their individual would do poorly in a non-ICF community setting. 
  • Most respondents for both surveys were informed about alternatives to their individuals’ current placements based on their own evaluations of different settings and, in some cases, the individuals’ prior placements in other settings. 
Especially revealing were the personal examples and responses provided by respondents, primarily families, in response to this question:

“What would you like our government to know about the current move to de-institutionalize ICF residents in favor of small community-based facilities?”  

What mattered most to families of those receiving care in both ICF and Non-ICF settings was that their family members with I/DD received the care they needed and that their right to individual choice was respected. As so aptly stated by one respondent –

“Good public policies should be based on experience, common sense and humanity. There should be deference and respect for the positions of families who have first-hand experience in the care and treatment of persons with life-long disabilities” (ICF Survey respondent). 

About VOR

from the Nonprofit Quarterly, July 2014:  "People as Pendulums: Deinstitutionalization and People with Intellectual and Developmental Disabilities" by Tamie Hopp, VOR Director of Government Relations & Advocacy

Thursday, April 9, 2015

Michigan: Aacorn Farm - Expanding Choices, Building Community

Check out the Website for Aacorn Farm, an innovative agricultural community for adults with autism and other disabilities. It has an especially good "newsroom" with up-to-date information on autism.

Are innovative programs for people with autism and other developmental disabilities going to fall victim to the pressure by the federal government and federally-funded advocacy organizations to deny people with DD access to specialized residential and service options? See more about intentional communities and choice at the  Coalition for Community Choice .

Wednesday, April 1, 2015

No Joke : Job Consultant concedes that the comatose are not good candidates for integrated employment!

Eight thousand people with disabilities currently work in sheltered workshops in New York, but that will change if the state and advocates for integrated competitive employment for all have their way. North Country Public Radio featured a story (3/30/15) by David Sommerstein, in Watertown, New York, asking the question, “Can every person with a disability hold a regular job?”

One of the people interviewed was Michael Callahan, who argues that community employment is “achievable for almost everyone…”. He goes on to say, “So bring me a person who’s in a coma and let’s agree right now until they get out of the coma we won’t try to get them a job," But anyone short of comatose is a likely candidate for a minimum wage job in the community. Did I mention that Michael Callahan makes his living as president of a consulting firm (Marc Gold & Associates) that, among other things, finds integrated employment for people with disabilities?

The NCPR story includes interviews with people who welcome the closure of sheltered workshops and others, including people who work in these specialized work centers,  who say they fill a vital need in their communities. 

This is very personal for me, because my two sons, who are not comatose, are nevertheless profoundly limited by their multiple disabilities. Their needs are great: along with 24/7 care, they need activities and social relationships with with people who accept and respect them for who they are.  But that does not include working at a job that pays minimum wage. I always wonder about people who say they could place anyone not in a coma successfully in a job with the proper supports. With unlimited funding and effort, supporting my sons in employment is still unimaginable.  What are they doing this for? To make a point? To prove that their ideology that says everyone can be employed in the community is true?

I have a question for Mike Callahan and this is not a joke, either. By his way of thinking, how can he justify dismissing the employability of a person in a coma? We know that some people in comas are aware of their surroundings and eventually recover. Is it fair to exclude the comatose from the opportunity to work in supported employment in the community?

The NCPR story is worth listening to, but the report begins with a misleading statement about the basis for closing sheltered workshops. This is a common blunder that reporters make when they do not check out source materials and instead rely on what they are told.

The NCPR report begins with  this statement: “The United States Supreme Court ruled that keeping people with disabilities in separate work settings constitutes discrimination more than 15 years ago..." This is not true. Every reporter who wants to talk about the 1999 Supreme Court Olmstead decision should be required to read it. The court in Olmstead did not mention sheltered workshops. The case is about two women in Georgia who were at one time institutionalized, but wanted to receive services in a community setting. They were deemed capable of this by the professionals who treated them and community-based services were adequate to their needs. The court determined that unjustified isolation is discrimination under the Americans with Disabilities Act (ADA). But the court also recognized "...that nothing in the ADA or its implementing regulations condones termination of institutional settings for persons unable to handle or benefit from community settings...Nor is there any federal requirement that community based treatment be imposed on patients who do not desire it." The ADA requires that programs are provided in the most integrated setting appropriate to the needs of the individual.

I wouldn’t have to worry that the services and programs that my sons need might be eliminated by overzealous disability advocates, if we had  proper enforcement of the Olmstead decision. Unfortunately, Olmstead is being used for purposes never intended by the Supreme Court, as a tool to help states close programs, eliminate residential options, and relieve the states of responsibility for people with more severe disabilities under the guise of preventing discrimination.

[This post was tweaked and updated later in the day, 4/1/15...JB]

Monday, March 30, 2015

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

Wednesday, March 25, 2015

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:


Tuesday, March 24, 2015

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.


Michigan Developmental Disabilities Council
Community Conversation
Friday, April 10, 2015
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.