Michigan: Law affecting minimum wage and sick leave is undermined by lame duck legislature

December 3, 2018

What the legislature giveth, the Lame Ducks taketh away...

The Michigan Community Mental Health system that provides services to people with developmental and other disabilities is in a crisis caused in part by the low wages of direct service professionals who provide care to people with disabilities. Whether an individual lives in a licensed setting or unlicensed home of their own or shares a home with others or with their family, the help they need to survive is often provided by a caregiver paid for by Medicaid.

Before the November 2018 election, hundreds of thousands of signatures were gathered to support a ballot initiative that would raise the state’s minimum wage to $12/hour by 2022 and allow employees to accumulate sick leave of 1 hour for every 30 days worked. The ballot initiative proved to be extremely popular which prompted the legislature to pass a law that would do exactly what the ballot initiative would do, but with the intention of amending the law during the lame duck session to scale way back on its requirements. This is exactly what happened. A bill scaling back the promises of the ballot initiative has passed the Michigan Senate and is now in the Michigan House of Representatives.

According to the Community Mental Health Association of Michigan (CMHAM) and other state organizations, a wage increase above minimum wage for direct care workers is needed to stabilize the work force that now has a 37% turnover rate. The difficulty and responsibility of the jobs these workers perform should be recognized and supported with better pay and working conditions.

Further complicating the CMH crisis is the necessity for the legislature to assure adequate Medicaid funding to pay workers to provide the services needed for people with disabilities. An increase in the minimum wage overall should bring an upward pressure to raise wages for direct care workers and to acknowledge the importance of adequate Medicaid funding to provide services. 

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More on the need to raise direct care workers wages above minimum wage...

See also, "Michigan state senators on Wednesday dramatically scaled back two citizen-backed laws to raise the minimum wage and require paid sick leave."

And furthermore, this is from a Detroit Free Press column by Brian Dickerson on  12/2/18: 

• Lock 148 elected representatives in a couple of large rooms.
• Remind those assembled that more than a third of them will be out of their jobs in 30 days.
• Sit back and enjoy the fun as dozens of lawmakers with nothing left to lose take the $57-billion-a-year enterprise called the State of Michigan for one last, wild spin around the block.

"What could possibly go wrong?"

Meet VOR: A Voice of Reason

This description of VOR, an organization that I have belonged to for over 15 years, was part of the packet of materials passed along to every member of the US House of Representatives and the US Senate in June 2018. Regretfully, I missed this year's VOR conference, but VOR's message is clear: even though we represent a small minority (about 5% of the I/DD population), we support a full range of services and residential options to meet the needs of all people with I/DD. 

"The goals of one group should never be placed at odds with the needs of the other. "

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Meet VOR:  A Voice of Reason, speaking out for people with Intellectual and Developmental Disabilities

For 35 years, VOR has advocated for high quality care and human rights for all people with intellectual and developmental disabilities (I/DD). Our membership is mostly comprised of families of individuals with severe or profound intellectual disabilities, often complicated by significant medical, psychological, or behavioral conditions. Many of our loved ones are non-verbal or non-ambulatory. Many engage in self-injuring behaviors. They often require 24/7 care, provided by well-trained and caring direct support professionals. Our family members constitute a minority within a minority. They represent about 5% of the entire population of individuals with I/DD. The home and community-based settings that work for many people with I/DD often fail to meet the needs of these severely disabled, vulnerable individuals.

To acknowledge the extensive range of needs and aspirations of all members of this diverse population, VOR supports Individual and Family Choice, and a Full Continuum of Care. In order to have choice, there must be a full range of quality options available, tailored to meet the intellectual, psychological, behavioral, and physical needs of this diverse population. One size never fits all. 

We support the goals of those who aspire to integrate into the society around them in their choices of residence, education, and employment. We also support the needs of those who would be endangered in an under-protected environment, who can never integrate fully because they cannot even perform the simplest of daily skills, like brushing their teeth, washing, toileting, or verbalizing their needs, their desires, their agitation, or their anger. The goals of one group should never be placed at odds with the needs of the other. We support all residential options, including the individual’s own home, family home, group homes, intentional communities, and larger congregate settings, such as public and private Intermediate Care Facilities for Individuals with Intellectual Disabilities (ICF’s/IID, or ICF’s).

By the same principle, we support a full range of employment opportunities for people with I/DD. We support the drive for integrated, competitive employment and laud the proliferation of programs aimed at helping people with intellectual disabilities achieve their full potential. But we oppose the movement to eliminate center-based employment, sheltered workshops, and the movement to eliminate compensatory wages by eliminating Section 14(c) of the Fair Labor Standards Act. People who cannot compete in the open job market need this opportunity. They enjoy this level of work, the peer environment, and the opportunity to be productive. The movement toward competitive employment for some should not mandate the elimination of programs that work for others. 

There is no singular solution that is appropriate to all individuals with I/DD. Yet, this is the underlying premise of policies promoted by many powerful advocacy groups. This is a dangerous assumption, especially for the most vulnerable... 

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For more information on VOR, read more of the 2018 conference materials

Majority of people with Intellectual and Developmental Disabilities live with their families; only 13.5% in supervised residential settings

Data from "State of the States in Intellectual and Developmental Disabilities" 2015 

This is something to consider when family voices are discounted or dismissed for lack of "authenticity" when they speak on behalf of their disabled family members.

Many advocacy organizations promote the idea that if we close all institutions and other congregate settings (only 13.5% of people with IDD live in such settings), we will save vast amounts of money that can then go toward everyone living in their own home or with their families. The vast majority of people with IDD already live in their own homes or with their families, and yet we still have a nationwide crisis in care and housing for people with disabilities. To solve the crisis, we need to take a bold look at our nation's priorities and find the funds to pay for the services needed, rather than cannibalizing programs (such as supervised residential settings) that are more costly because they serve people who are the most vulnerable and hardest to care for. 

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5.1 million = Number of people with Intellectual and Developmental Disabilities (IDD)

13.5% or 604,200 live in a supervised residential setting.

15.7% or 795,700 live alone or with a roommate.

71% or 3.6 million live with a Family Caregiver :

• 24.0% of the 3.6 million live with caregivers over 60 years old. 
• 35.0% of the 3.6 million live with caregivers 41-59 years old 
• 41.0% of the 3.6 million live with family caregivers less than 41 years old. 

Changes to Immigration Policy and its Effects on Caregiving

The following are excerpts from a Kaiser Health News (KHN) article, “As Trump Targets Immigrants, Elderly Brace To Lose Caregivers”, by Melissa Bailey, 3/26/18. Changes in immigration policy exacerbate the ability to hire caregivers for people who need Long Term Services and Supports (LTSS). The emphasis here is mostly on the effects on the elderly population, but it applies also to people with disabilities who rely on Medicaid to pay for caregivers.

There have been many alarming stories about the shortage of caregivers and the reasons for it: low pay, lack of respect for the work that these people do, and few incentives to attract reliable high quality workers to care for our loved ones.

Read the full story to get an idea of the impact of immigration changes on the personal lives of people needing the services of caregivers and the caregivers themselves. Many of the excerpts below are a reminder of how big a problem this is and how little has been done to improve the situation.

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"Nirva [a Haitian caregiver] is one of about 59,000 Haitians living in the U.S. under Temporary Protected Status (TPS), a humanitarian program that gave them permission to work and live here after the January 2010 earthquake devastated their country. Many work in health care, often in grueling, low-wage jobs as nursing assistants or home health aides"

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“Ending TPS for Haitians ‘will have a devastating impact on the ability of skilled nursing facilities to provide quality care to frail and disabled residents,’ warned Tara Gregorio, president of the Massachusetts Senior Care Association, which represents 400 elder care facilities, in a letter published in The Boston Globe. Nursing facilities employ about 4,300 Haitians across the state, she said.

“‘We are very concerned about the threat of losing these dedicated, hardworking individuals, particularly at a time when we cannot afford to lose workers,’ Gregorio said in a recent interview. In Massachusetts, 1 in 7 certified nursing assistant (CNA) positions are vacant, a shortage of 3,000 workers, she said.”

“Nationwide, 1 million immigrants work in direct care — as CNAs, personal care attendants or home health aides — according to the Paraprofessional Healthcare Institute, a New York-based organization that studies the workforce. Immigrants make up 1 in 4 workers, said Robert Espinoza, PHI’s vice president of policy. Turnover is high, he said, because the work is difficult and wages are low. The median wage for personal care attendants and home health aides is $10.66 per hour, and $12.78 per hour for CNAs. Workers often receive little training and leave when they find higher-paying jobs at retail counters or fast-food restaurants, he said.

“The country faces a severe shortage in home health aides. With 10,000 baby boomers turning 65 each day, an even more serious shortfall lies ahead, according to Paul Osterman, a professor at Massachusetts Institute of Technology’s Sloan School of Management. He predicts a national shortfall of 151,000 direct care workers by 2030, a gap that will grow to 355,000 by 2040. That shortage will escalate if immigrant workers lose work permits, or if other industries raise wages and lure away direct care workers, he said.”

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“It’s not clear how many direct care workers rely on TPS, but PHI calculates there are 34,600 who are non-U.S. citizens from Haiti, El Salvador, Nicaragua (for which TPS is ending next year) and Honduras, whose TPS designation expires in July. In addition, another 11,000 come from countries affected by Trump’s travel ban, primarily from Somalia and Iran, and about 69,800 are non-U.S. citizens from Mexico, PHI’s Espinoza said. Even immigrants with secure legal status may be affected when family members are deported, he noted. Under Trump, non-criminal immigration arrests have doubled.”

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“'What people don’t seem to understand is that people from other countries really are the backbone of long-term care,' said Sister Jacquelyn McCarthy, CEO of Bethany Health Care Center in Framingham, Mass., which runs a nursing home with 170 patients. She has eight Haitian and Salvadoran workers with TPS, mostly certified nursing assistants. They show up reliably for 4:30 a.m. shifts and never call out sick, she said. Many of them have worked there for over five years. She said she already has six CNA vacancies and can’t afford to lose more.”

KHN’s coverage of these topics is supported by Gordon and Betty Moore Foundation and John A. Hartford Foundation

Kaiser Health News is a nonprofit news service covering health issues. It is an editorially independent program of the Kaiser Family Foundation, which is not affiliated with Kaiser Permanente.

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For more information see:

PHI (Paraprofessional Healthcare Institute)

"Severe Shortage of Home Health Workers Robs Thousands of Proper Care" by Judith Graham, 4/26/17

PA: Fix the Direct Support Professionals Crisis

See Fix the Direct Support Crisis

By the numbers:

• Direct Support Professionals (DSPs) in Pennsylvania make an average wage of $11.54/hour. They provide daily support to people with intellectual disabilities and autism. 
• $11.54/hour is $4 per hour less than a living wage for a working family in Pennsylvania. 
• The turnover rate of DSPs is 26.9% (over 8,500 DSPs every year) and the vacancy rate for DSPs is 12.1% (over 3,500 DSPs per year). 
• The Commonwealth of Pennsylvania is the sole funder of the wages of DSPs. The state budget has grown by over $6.3 billion since 2009, but the rate increases and DSP wages have flatlined. 

This crisis is nationwide.

When a caregiver says, "I can't do this anymore!"

The New York Times has a “Modern Love” series of weekly reader-submitted essays that “explore the joys and tribulations of  love”. This isn't exactly what I would call a love story, but more of an essay on the sometimes fragile bonds between caregiver and the one cared for.  “When Love Isn’t as Simple as Standing by your Man”, 9/9/16, is written by Eirek Gumeny who has endured a lifetime of health crises. For much of his adult life, his spouse has also been his caregiver.

Gumeny has cystic fibrosis, a progressive genetic disorder that  causes lung infections and limits the ability to breathe. He and his wife were proud of how they managed every health and life crisis that came along, believing that their love was indestructible. As Eirik’s health deteriorated to the point where he needed a double lung transplant, he and his wife faced this latest crisis with their usual grit and determination.

Then she threatened to leave him six weeks after a double lung transplant.  

As a parent of two profoundly mentally and physically disabled sons, I can relate to the spouse holding herself together until her husband was at least on his way to recovery and a better quality of life.  Holding in reserve the energy it takes for a full-blown meltdown until it can be done to full effect is not unfamiliar to me and other parents who have been through hell and high water with their disabled children. The demands on caregivers for people with complex and severe disabilities often leave the caregiver with no alternative than to seemingly do more than is humanly possible until he or she just can't do it anymore. 

Gumeny’s examination of the effects of his care on himself and his spouse provides insights into the loving relationship they had and why it was suddenly falling apart. After his initial shock and smoldering resentment for his wife’s seeming to abandon him and his ongoing need for her, he comes to realize how the bad effects on him of his double lung transplant were muted by his treatment and hospitalization. For his wife, the effects spiraled out of control:

“None of the pamphlets mention the psychological toll of waiting to die or of waiting for (even grimly rooting for) someone else to die so that you can get that person’s lungs. They don’t explain how not to feel like a monster about that. No one tells you that the physical scars are the easy ones.

“My wife, Monica, knows this all intimately now, better even than I do. While I was high on anti-anxiety medications and cannabis-based appetite stimulants, she was the one who had to remain clearheaded enough to clean up after me and keep us rolling in buckets of expensive prescriptions.

“She didn’t have the luxury of mentally checking out, the way I did. She would spend her mornings dealing with the gruesome symptoms of my death spiral, and then spend the afternoons trying to do her day job from my hospital room.”

…

"Every problem my waning health presented Monica had to handle twice over, worrying about me and worrying about her life after me if it all went sideways. Every time someone told me I was going to die, she had to sit there silently, taking it in.

“I could petulantly shrug off all the dire news and flip to the Cartoon Network, but she didn’t have that option. She had to deal with the information, the issues and the repercussions, acting as nursemaid, housekeeper, chauffeur and lawyer for me — the man who was supposed to share her life, not consume it.”

Monica did return, but, says Eirik, “Our love may be indestructible, but we sure as hell aren’t.”

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The Cystic Fibrosis Foundation

Adults with autism: "Going over the cliff" into adulthood with tragic results

JaLynn Prince from the Madison House Autism Foundation 

The phrase, "going over the cliff",  has become a standard description of what happens to far too many adults with autism who no longer qualify for educational services and are left with not much to do and nowhere to go. When the autism diagnosis includes intellectual disabilities, severe behavioral problems, and a need for constant care and supervision, family members are forced to adjust to an even more difficult situation than when their children were in school. Parents especially may feel a desperation that makes them wonder if this is a job they can ever retire from and what will happen when they can't do it anymore?

The Washington Post first reported a crime story on July 21, 2014, "Rockville, Md., couple charged with abusing twin 22-year-old autistic sons" by Dan Morse. Police came to the house with a search warrant on an unrelated matter and found the twins, locked in "a basement room with no furniture, no working lights and a single comforter on a bare tile floor."  The men's parents locked the twins into the room at night and had removed furniture because it was soiled. The room was locked from the outside and smelled of urine. This led to further investigation and charges of abuse and false imprisonment brought against the parents.

The crime report set off a more general discussion about the lack of services for autistic adults and the difficulty in caring for people with the most severe and complex forms of autism. The Washington Post published another article on 7/26/14, "Coping with adult children’s autism, parents may face ‘least bad’ decisions" by Dan Morse. The article included a story, not about abuse and neglect, but about another autistic young man whose parents appear to be exceptionally resourceful in figuring out how to keep him safe while living in the family home. Nevertheless, they have had to make considerable sacrifices to take care of him and still face situations that even they are not prepared for:

"...As [John's father] speaks, his 18-year-old son John starts to pace and moan in the kitchen. John typically won’t sit down for dinner until he and his parents are around the table, holding hands, his father saying the blessing. Mark walks toward the kitchen, past the locked front door, the locked door to the garage, the locked door to the basement. Those barriers, along with a tracking device John wears, the burglar alarm and the fence around the house, are designed to keep him from wandering off.

"But sometimes, even that isn’t enough. Three years ago, wearing green pajamas, John made his way to a Metro train platform four miles away just before a train came barreling into the station.

"For parents like the Bucknams, their children’s transition to adulthood is filled with gut-wrenching choices and challenges. The assistance connected with high school programs goes away. The best adult services often are at the end of long waiting lists. The pressures mount for parents to prepare for life after they’re gone…."

Later in the article a quote from Mr. Bucknam appears that is apparently the inspiration for the title of the article:

“'We can’t condone their choices,' says Mark Bucknam… 'But it’s possible that, in their minds, this was the least bad way to deal with this,' Bucknam says."

This set off a reaction from a number of disability advocacy groups condemning the paper for, in their view, offering an excuse for, rather than condemnation of, abusive treatment of people with disabilities by their parents or other caregivers. I don't see it that way, but more about that later.

U.S. House Bill proposed to help caregivers avoid an impoverished old age

From the New York Times, "Addressing Caregivers’ Loss of Retirement Income" by Paula Span, 7/25/2014:

"Earlier this month Representative Nita M. Lowey, Democrat of New York, introduced what she’s calling the Social Security Caregiver Credit Act, intended to increase retirement income for middle-class citizens who must reduce their work hours or leave the work force because of caregiving duties."

Passage of the bill is a long shot, but it offers one solution to the financial toll that caregivers pay to take care of a dependent family member. According to the article:

"A MetLife study in 2011, ...estimated that men who reduced work hours to provide care for parents received almost $38,000 less in Social Security benefits. If they stopped working, they gave up more than $144,000.

"The damage from cutting back on work was worse for women: they lost more than $64,000 in Social Security benefits. Leaving the work force to care for a parent cost them more than $131,000 in addition to the lost wages (and, sometimes, pension contributions) themselves."
 
Caregiver credits would apply to people who earn no more than the national average wage ($44,320 in 2012).

According to Chris Bigelow, Lowey's legislative director, "someone not working at all would get $22,000 recorded as his or her earnings that year; someone working part-time at an annual $33,000 salary gets an additional $5,500 credited. Caregivers could qualify for the credit for 60 months and wouldn’t have to use them consecutively. You could take care of your mother for a year, get a credit, return to work, then later get credit if you cared for your father."

A "dependent relative" includes adult children who are "chronically dependent" and need assistance with activities of daily living.

Michigan Disability Advocates and Campaign Finance Shenanigans

An article in the Detroit News from March 10, 2014, "Mich.slaps health care union with 2nd largest elections fine ever", by Chad Livengood, covers campaign financing law violations by the Service Employees International Union (SEIU) during a campaign to support a ballot proposal in the November 2012 election. The headline does not convey a surprising fact: Michigan disability advocates were involved as the treasurers of the campaign fundraising committees that were investigated and called to account for their handling of campaign funds and failures to meet reporting requirements in the law. The body of the article goes into some detail about Proposal 4, which was defeated in the election, and the campaign committees 
supporting it.

The article summarizes the actions by the Michigan Secretary of State:

"Secretary of State Ruth Johnson’s office slapped the labor union with a $199,000 fine for multiple campaign finance violations after it used a nonprofit corporation to funnel $9.36 million in contributions into a ballot campaign seeking the passage of Proposal 4 in 2012. The fine is the second largest in Michigan elections history...

"The ballot campaign, Citizens for Affordable Quality Home Care, received nearly all of its funding from a single company called Home Care First Inc., which received its funding from SEIU and Michigan-based affiliates, according to a Bureau of Elections investigation.

"Home Care First Inc. 'belatedly' set up a ballot committee that reported after the November 2012 election that all of its money came from SEIU and its affiliates, an investigative report states.

"The state found SEIU and campaign treasurers for the two committees violated the Michigan Campaign Finance Act for 49 transactions of commingling funds in multiple bank accounts, 31 contributions involving incomplete or inaccurate campaign statements and three late contribution reports."

Dohn Hoyle, the Executive Director of The ARC Michigan, a state advocacy organization for people with developmental disabilities, was the treasurer of the Citizens for Affordable Quality Home Care (CAQHC). Norman G. DeLisle, Jr., who has been the Executive Director of the Michigan Disability Rights Coalition (MDRC) since 1997, was the treasurer of Home Care First Incorporated (HCFI). 

The campaign committees were both formed in March 2012. CAQHC received donations funneled through HCFI without disclosing that the HCFI funds came entirely from SEIU-affiliated organizations. HCFI did not file all required forms with the state until just before the 2012 election and did not reveal the source of its funding until after the election. 

Hoyle, DeLisle, and the SEIU did not admit guilt and no criminal charges were filed as a result of the investigation. Instead,  a conciliation agreement was reached with the Secretary of State's Office with regard to the complaint, D'Assandro v Home Care First, Inc and Citizens for Affordable Quality Home Care and the $199,000 fine was levied by the Secretary of State. The SEIU and the disability advocates admitted that "mistakes were made" and claimed that they had not fully understood the campaign financing law. This is surprising, since presumably both the SEIU and the committee campaign treasurers had access to attorneys to advise them when they set up the campaign committees. 

Filling in the blanks: Why were disability advocates involved in a ballot proposal campaign?
 
Proposal 4, a statewide ballot proposal that was defeated in the November 2012 election, was meant to amend the Michigan constitution to continue to allow union representation and collective bargaining rights for Medicaid-funded Home Help Workers and to reinstate the Michigan Quality Community Care Council, which had been defunded by the legislature, and rename it as the Michigan Home Quality Care Council. The Council would continue to be made up mostly of advocates for people with disabilities and seniors and would act as the representative for employers of Home Help Workers for the purposes of collective bargaining with the state. The employers of home help workers are the seniors and people with disabilities who receive Medicaid funding to pay for help with household chores and personal care in their own homes. The Council would also have maintained a registry of workers who had passed background checks and would offer training to improve job skills. 

Other relevant facts:

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, prior to being defunded, the Council received about $1.1 million per year from the state. 

Many factors make Home Help Workers a difficult and unusual population to unionize:

• About 75% of the Home Help Workers in Michigan are family members or close friends of the seniors and people with disabilities who hire them. Often the employee is the parent or another family member. Even more complicated is the fact that the employee may also be the legal guardian of the employer, the senior or disabled person. 
• In 2005, when the election for unionization of Home Help Workers was held, only about 20% of those employed voted. There was confusion, especially among family members, about whether unionization applied to them at all, because many of them did not consider themselves "employees".
• Because the work takes place in the employers home, it is difficult to assess or regulate working conditions.
• The union was limited in how much it could bargain for increased wages because of  appropriations decisions made by the legislature.

It does not appear that seniors and people with disabilities had any say in who represented them in the collective bargaining process. 

The Home Help program has been around since the 1980's and its continued existence was not threatened by either the passage or defeat of Proposal 4.

Advocacy for whom?

The financial entanglements of the disability advocates with the SEIU during the proposal 4 campaign seems to be a conflict of interest with the advocates' representation of people with disabilities and seniors.
 
When advocates and their organizations claim to represent people with disabilities, they need to maintain their independence and avoid conflicts of interest. In this convoluted campaign to amend Michigan's constitution, advocates allied themselves with a labor union while simultaneously seeking to continue to represent seniors and people with disabilities in collective bargaining with the union. The participation  of disability advocates in campaign shenanigans of this magnitude certainly did not enhance the lives of people with disabilities nor did it protect the reputations of their organizations.

More information:

Michigan Secretary of State press release on the finance campaign investigation.

For more information on Proposal 4, see The DD News Blog.

To see documents relating to the complaint investigation, link here to the Secretary of State's website. Then scroll down to 8/30/2013, D'Assandro v Home Care … and link to documents in the right hand column, parts 1 - 12.

More news coverage on the campaign finance violations from Mlive and the Detroit Free Press

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P.S. - Irony Alert!

During the campaign for Proposal 4, a report from MIRS Capitol Capsule for April 10, 2012, quoted Mr. Hoyle as he complained about the the Governor signing a bill to reverse the ability of home help workers to unionize as state employees and the defunding of the MQCCC:

" Hoyle said he doesn’t understand people who have not talked with or dealt with MQCCC but are 'so bent on changing things without regard for what it does to people.'

"'To me it is just an ideological problem when people get so bent in one direction and ignore people who are on the other end of it, those with disabilities and those who are older,' he said. 'That’s just sad in my mind.'"

Many families will appreciate the irony of Mr. Hoyle's complaints, considering his own ideological bent and the adverse effects it has on people with disabilities. See "The ARC Michigan to state: Stop funding congregate settings" and "The ARC Michigan: Our way or the highway" 

How Natural are Natural Supports?

Natural Supports

"Natural Supports" is the name given to unpaid care giving provided by a disabled person's family and friends. Unpaid caregivers should be supported and encouraged for all they do voluntarily for their disabled family members and friends. They should also be acknowledged for their important contribution to the overall support system for people with disabilities. But let's not glorify the virtues of Natural Supports as a way to avoid facing gaps in the system of care and the lack of paid services and residential options for people with developmental disabilities. 
VOR, a national organization that supports a full array of residential and service options for people with intellectual and developmental disabilities, addresses these issues in its November 16, 2012  newsletter in an article called "The Growing Burden on Caregivers: A Focus on Natural Supports".

According to the article: 

"In this difficult economy, policymakers are quite tempted to support and expand free natural supports. Some advocates leverage this temptation and oversell the virtues of natural supports while also seeking closure of specialized residential (large and small), supported employment, and other services…However, how “natural” is it for a middle aged person to be living with, and supported by, elderly parents? There are an unprecedented number of families in exactly that situation, arguably due to aggressive efforts over the years to dismantle specialized services and unreasonable pressure by advocates and states on families to take on caregiving ("natural support") duties in the family home…."

VOR concludes:

"..if a family has access to adequate natural supports and chooses this arrangement over specialized supports, VOR supports it. However, consistent with our mission in support of high quality care and human rights for all people with intellectual and developmental disabilities, natural supports should not be imposed on families when doing so creates an impossible burden on too few people to the detriment the individual’s and the family’s mental, physical and financial health, and indeed, risks separating the family unit itself."

The VOR newsletter gives some perspective on this issue and links to other articles and more information. This is a good place to begin examining an approach to serving people with DD that has many families wondering why public agencies that are supposed to be helping them are so intent on handing over more and more care giving responsibilities to the family."

A report on natural supports called "Building a National Agenda for Supporting Families with a Member with Intellectual and Developmental Disabilities" came out of the Wingspread Family Support Summit, 3/6/11-3/8/11, in Racine, Wisconsin. Professional advocates, mostly from programs funded by the federal Developmental Disabilities Act, put their heads together and figured out how to get more funding for their organizations by enhancing the capacity of parents and other family members to be more accepting of their fate as caregivers and the prospect of making do with less for the foreseeable future. More about this later.

What do families really think about "Natural Supports"? A family group in Colorado surveyed 500 family members to find out. The results are here. 

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.

"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: