I want to personally encourage the public to participate in this discussion of the issue of sub-minimum wages, their affect on people with DD, and the availability of appropriate programs and services to meet the diverse needs of the DD population. The DD Council will be taking up this issue at the April 2016 meeting. To give the public and especially individuals with DD and their families a chance to weigh-in, the council anticipates hearing from people during the public comment period and will also accept written comments that will be distributed to council members for their consideration. The DD Council always schedules time for public comments at their meetings and welcomes public participation.
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The Michigan Developmental Disabilities Council wants to hear from you on the issue of sub-minimum wage certificates and whether the DD Council should support amending current legislation to prohibit the ability under the state law of employers to pay less than the minimum wage to persons with physical or mental disabilities, regardless of an individual’s productivity and earning capacity. For people with DD, sub-minimum wage certificates are used primarily by employers for sheltered workshops (facility-based employment or skill-building services). [For more information, see below.]
The DD Council will be considering this issue at its next meeting on:
Tuesday, April 5th, 2016
10:45 am to Noon
at the Lewis Cass Building,
320 S. Walnut Street between Washtenaw and Kalamazoo
Lansing, MI
This is a new location for the DD Council.
The opportunity for public comment is usually at the beginning of the meeting. The exact wording of the recommendation before the council may change slightly, but the main idea is the same as stated above. If you plan to attend public comment, please notify Dee Florence at FlorenceD1@michigan.gov or (517) 284-7293 by Thursday, March 30, 2016.
Send written comments to Yasmina Bouraoui at bouraouiy@michigan.gov or Dee Florence at FlorenceD1@michigan.gov by Friday, April 1st, 2016. These will be distributed to DD Council members.
MORE INFORMATION:
What are sub-minimum wage certificates?
The federal Fair Labor Standards Act currently allows employers of people with disabilities to apply for “authorizing certificates” from the U.S. Department of Labor to pay special minimum wages (SMWs) “to workers with disabilities whose productive and earning capacities are impaired for the work being performed.”
“An SMW must also be a commensurate wage, based on the individual productivity of the worker with a disability (no matter how limited) in proportion to the productivity of experienced workers who do not have disabilities that impact their productivity when performing essentially the same work in the same vicinity.”
For people with developmental disabilities, wage certificates are used primarily by sheltered workshops (facility-based employment or skill-building programs) as an incentive to hire people who might otherwise not be employable. These facility-based programs often provide an array of services beyond employment. Without the wage certificates, many of these programs would not be able to continue operating. In integrated Supported Employment work settings, disabled workers receive at least minimum wage along with support services; the wage certificates are not used.
The DD Council staff determined that states may pass legislation eliminating the use of wage certificates by employers for people with developmental disabilities and looked into the feasibility of doing so. See Staff Report here.
For more information on the effect of eliminating the choice of facility-based employment, especially for people with more severe disabilities, with the primary alternative being integrated supported employment, see The DD News Blog. APSE, The Association of People Supporting Employment First, supports phasing out the use of facility-based work programs in favor of integrated, competitive employment for all.
"How do I tell an elderly mother that her 'job' 24/7 is to take care of her adult son/daughter forever, that services are changing — and not for the better?"
This is an editorial by Cheryl Englert, the mother of a son with disabilities and a special education teacher from rural Upstate New York: “Insights: Our families will not be silenced”, 4/11/15.
After more than 30 years of working to see that New York state provides necessary supports to meet the needs of men and women with disabilities at work and in their homes, Cheryl Englert sees all that hard work being undone:
“While our local representatives have been supportive, Gov. Cuomo is turning his back on our most vulnerable citizens. Examples include a plan to close all sheltered work centers within six years, and a decree that actually prohibits new workshop employment right now. On the residential front, he has vetoed four bills that would have begun to address an expanding list of individuals who await housing because their family members are growing too old to effectively care for them."
Cheryl’s son Matt has a good life living in a 4-person home that provides 24-hour/day care to him and his best friends. He also works and socializes at a local sheltered work center. His mother can no longer speak confidently to the other mothers she talks to that those opportunities will continue to be available.
“The lack of choices and opportunities has had drastic effects on those families. It is like flying into a storm where you cannot see where you are going or how long will it take to reach the sunshine…”
But they will not be silenced:
“Right now, hundreds of us across the state are writing letters and making phone calls to our elected representatives. We are organizing and expanding activism efforts, such as The Arc’s Family Advocacy Group (www.lwarc.org) — all in the name of better lives for individuals with disabilities and their families. It’s time to get this great state back on track!”
Read the whole article here.
This is from an article in Disability Scoop, "Disability Spending Drops for the First Time in Years" by Michelle Diament, 7/22/13, based on the 2013 State of the States in Developmental Disabilities, a report from the University of Colorado:
- "Overall government spending on people with intellectual and developmental disabilities for 2011 — the most recent year for which data is available — was $56.65 billion, the report found.
- "Of the funding distributed nationwide that year, about 20 percent went toward programs providing family supports, employment services, personal assistance and similar aid.
- "Almost 60 percent went toward residential settings for six or fewer people while 5 percent funded living environments with seven to 15 residents. State-run institutions with 16 or more residents received 11.5 percent of total spending and 3 percent went to institutions that were privately run.
- "Nearly 80 percent of government spending on people with intellectual and developmental disabilities was funneled through the Medicaid program in 2011, the report found. Other funding came from the states and federal programs like Social Security."
More information on the State of the States Report was presented here in a Webinar on Feb. 27, 2013, hosted by the American Association on Intellectual and Developmental Disabilities (AAIDD).
The presentation shows some disturbing trends:
"Current Trend: Support Services Waivers Characterized By:
- "A low dollar cap on the total amount of HCBS Waiver services authorized for each beneficiary
- "Flexibility in the selection of services within the dollar cap
- "Expectation that unpaid family caregivers will provide significant support to Waiver participants [emphasis added]"
"An Estimated 853 Thousand Persons with I/DD Live at Home with Aging Caregivers"
Intellectual and Developmental Disability (I/DD) spending per $1,000 of state aggregate personal income, shows that Michigan ranks 26th at $3.75, a reduction in spending of 0.2%
In addition is this from another 2013 report from UCP, "The Case for Inclusion":
"Waiting lists for residential and community services are high and show the unmet need. More than a quarter of a million people (268,000) are on a waiting list for Home and Community Based Services. This would require a daunting 44% increase in states' HCBS programs! However, 20 states report no waiting list or a small waiting list (requiring less than 10% program growth). This measure has gotten much worse over the life of the Case for Inclusion. Since the 2007 Ranking, the size of the waiting list nationally has almost doubled from 138,000 to 268,000."
In Summary: Less money is being spent on people with DD. Waiting lists for services have almost doubled since 2007. 853,000 people with DD live at home with aging parents. The expectation is that unpaid family caregivers will provide "significant support" to waiver recipients. And there don't appear to be any plans to relieve the burden on families by expanding residential options for people with DD.
I read reports, so you don't have to and this one is a doozy: "Building a National Agenda for Supporting Families with a Member with Intellectual and Developmental Disabilities".
The Supporting Families report came out of a conference held in March 2011 in Racine, Wisconsin. The conference was sponsored by the federal Administration on Developmental Disabilities (ADD) [now called the Administration on Intellectual and Developmental Disabilities (AIDD)]. Almost all the participants (see page 24 of the report) were professional advocates from programs and advocacy organizations funded, at least in part, by the federal Developmental Disabilities Act and administered by the ADD. Many of the participants are also identified as parents of children or adults with DD, but they attended the conference as representatives of their programs or organizations.
Like many ideas coming from advocacy groups for people with developmental disabilities, the idea of Supporting Families is a good one. When one looks deeper, however, and considers the report's recommendations and how they might be applied in the real world, "Supporting Families" proves to be, at best, lacking in common sense and, at worst, potentially harmful to the people the participating advocates claim to want to help.
The Supporting Families report establishes that families do, indeed, need help:
(from Page 4) "Today there are more than 4.7 million citizens with intellectual and developmental disabilities in the United States. More than 75% of those living in their communities without formal disability services and relying on their families for varying levels of support. [emphasis added] Of the 25% receiving services, over 56% live with their families; in some states, the figure is as high as 80%. For many families, the support provided neither is short term nor does it end when the family member turns eighteen years old".
(from Page 5) "Families often are faced with emotional, social, physical and economic demands that they may not have experienced had their child not been diagnosed with a disability.
- Twenty-eight percent of children with disabilities live below federal poverty levels as compared with 16% of children without disabilities.
- Parents of children with disabilities have lower rates of, and diminished opportunities for, employment and advancement than parents of children without disabilities.
- Over 58% of parents/caregivers spend more than 40 hours per week providing support for their loved one with I/DD beyond typical care. 40% spend more than 80 hours a week. [emphasis added]
- Long waiting lists for services and the increased lifespan of individuals withI/DD have contributed to a growing number of individuals with I/DD households where the primary caregivers are themselves aging."
Several things bear repeating before going on: 75% of people with DD receive no "formal" (read paid) services. 58% of family caregivers spend more than 40 hours per week, the equivalent of a full time job, caring for their family member and 40% spend more than 80 hours, the equivalent of two full-time jobs, caring for their family member.
As a parent who cared for one or the other or both of my two sons with severe intellectual and developmental disabilities at home for 28 years, I know enough about the difficulties that families face to know that the report and its recommendations coming out of the conference on Supporting Families is not the report I would have written. There is useful information to be extracted from from the report, however, and it reveals a great deal about how policy becomes twisted to serve interests other than those of people with disabilities.
Given the set of facts about families presented in the report, it appears to me that the first step in easing the burden placed on families by an inadequate system of care and services would be to increase services available and appropriate to the individual with DD. In addition, respite services that give families a break from care giving could be combined with expanded recreational and social activities for the DD family member giving the person with DD a much needed opportunity to have a life outside of the family home. Competent paid caregivers that come into the home to relieve families of constant care are also needed for both the family and the person with DD. These types of services go a long way toward keeping families together and reducing costs over the long term by delaying the need for residential placement outside the family home.
There are always situations where it is better for the welfare of the individual with DD and the family to have the option for the person with DD to reside outside the family home in a safe setting that provides services appropriate to the needs of the individual. We need to be especially cognizant, however, of people with DD who do not have families or whose aging parents no longer have the energy, ability, or will to care for another adult. We need to make sure that these individuals have the same rights and protections from harm that are are afforded people who are fortunate enough to have close and engaged family and friends who know and care what happens to them. It is often the case that people with DD with close connections to family and friends have their rights upheld and respected because a devoted family member or friend fought for them.
It is likely that providing appropriate services to the person with DD and expanding direct services to families such as respite care combined other activities for the person with DD may require an increase in funding from federal and state governments, but perhaps not as much as some policy makers fear. Families who have cared for loved ones with DD into their adult years are realistic about the effort and time that goes into caring for a person with severe disabilities and are least likely to squander resources on frivolous expenditures. In my experience, when families get together to fill gaps in the system of services that are lacking in their communities, they are extremely resourceful and marshal community resources that local service agencies are not able to do alone. Of course this means listening to families, respecting their expertise, and allowing them to do what they do best, which is acting as check on a dysfunctional system of services to make it work better for their DD family members.
That's my two cents. There's not much new or original here. It just makes sense in helping both people with developmental disabilities and their families to make the dysfunctional system of care and services work better. Now, what is it exactly that the advocates participating in the Supporting Families conference would do or not do to help families?
One thing is clear. The Supporting Families advocates are not about to stick their necks out and push for any increases in funding to directly provide services to families or to people with DD living at home. With the big push toward deinstitutionalization, which DD Act programs have supported wholeheartedly, the report acknowledges that as supports have shifted to community settings, (page 5) "the demand for long-term supports continues to increase and funding continues to be severely limited. This is further enhanced as the aging of the baby boom generation brings with it an increased need for public resources… These pressures, combined with a weak economy and large federal budget deficits require that developmental disability service systems transform the way they provide services and support. These changes include first recognizing the key role of the family as a primary [and mostly unpaid] source of support and for naming the source of day to day caregiving, and, second, supporting the capacity of the family members to provide needed assistance when necessary over time. Supports to the family unit must be a fundamental consideration in budgetary and long-term care policy as our nation moves forward."
The Supporting Families crew has opted to accept rather than challenge the idea that national economic conditions will inevitably result in fewer services and options for people with DD and their families and that families might as well get used to doing more with less. Where the Supporting Families advocates are willing to help is in supporting the capacity of families to do more with less.
stay tuned for more...
