VOR promises to empower you to make and protect quality of life choices for individuals with developmental disabilities

VOR and YOU:

Controversy Follows Speech by ACL's Mary Lazare

On July 11th, Mary Lazare, Principal Deputy Administrator and Acting Commissioner on Disabilities at the Administration for Community Living (ACL) spoke at the Autism Society's 2018 Convention in Washington, D.C. During her keynote speech, Ms. Lazare expressed recognition for Intermediate Care Facilities for Individuals with Intellectual Disabilities (ICF/IID) as part of the full system of care. While no recording of the speech exists, third hand accounts of Ms. Lazare's comments have spread throughout social media. "Community Only" advocates were outraged, and have raised their voices demanding retraction of her comments and calling for her resignation.

Three members of Congress wrote to the ACL to express their views on the matter. Their letter included reterences to the Supreme Court's decision in Olmstead that either willfully misrepresented the ruling or showed a lack of understanding of what is actually written in the decision. VOR wrote to the three representatives, along with ACL Administrator Lance Robertson and Ms. Lazare, to emphasize the need for ICFs/IID in a full continuum of care and to clarify the true meaning of Olmstead for these lawmakers and their associates.

Please click here to read VOR's response

Delaware - DD Council Misconduct

By Jill Barker, The DD News Blog, July 19, 2018

A special investigation of the Delaware Developmental Disabilities Council by the State Auditor found violations of state, federal, and internal requirements. The investigation revealed mishandling of contracts, violations of travel and other policies, and preferential treatment of friends by the Executive Director [Pat Maichle].

But before going into the details of the investigation, it helps to know more about DD Councils in general and what their purpose is: 

State Developmental Disabilities Councils have been around for decades, but most families and people with disabilities are only vaguely aware of them, if at all. DD Councils are among several programs that are funded by the Developmental Disabilities and Bill of Rights Act. They are “…federally funded, self-governing organizations charged with identifying the most pressing needs of people with developmental disabilities in their state or territory. Councils are committed to advancing public policy and systems change that help these individuals gain more control over their lives." 

DD Councils seem to feel no obligation to represent individuals and families who disagree with the ideological positions taken by most DD Councils. Neverthless, DD Councils, as federally funded and sanctioned agencies, are influential in promoting their goals with state and federal government, without ever acknowledging differences of opinion within the DD community. 

One of the more surprising facts about the DD Act is that it does not fund direct services to people with developmental disabilities. Funding for DD Act programs may incidentally provide services to people with disabilities and their families through, for instance, pilot programs or training and education, but funding is primarily focused on advocacy, “systems change”, research, and support for organizations and agencies that promote the goals of the DD Act.

The last time the DD Act was reauthorized was in the year 2000. Although the law was scheduled for reauthorization in 2007, Congress failed to take action. It has not taken a close look at the DD Act in eighteen years. Reauthorization is an occasion for Congress to review, investigate, and hold hearings on federal legislation to determine the effectiveness of the law, whether it is achieving the desired effects, and whether it should continue as is or be changed and improved. It is also a chance for people directly affected by the law and the general public to participate in advising Congress on their experiences and recommendations for change. Instead, the DD Act of 2000 remains unchanged, while appropriations are approved year after year without the benefit of more intensive scrutiny and oversight.

The Delaware DD Council

Here are the results of the Special Investigation of the DD Council in its driest form as outlined in the auditor's report:

“AOA [Auditor of Accounts] was able to substantiate or partially substantiate nine of ten allegations. Through the period under investigation, the Council failed to consistently follow State, federal, and internal procurement and travel rules.”

Continued on Jill's Blog

Read the State Auditor's Report on the Delaware DD Council here

Behavioral Health

New York - ‘Wrap-Around’ Model Helps Prevent Behavioral Hospitalizations

By Scott Scanlon, The Buffalo News via Disability Scoop, July 24, 2018

Erie County Medical Center had the distinction last year of releasing a teen patient with severe autism from the behavioral health emergency room — after 304 days.The 16-year-old was one of hundreds with developmental disabilities in the region — and thousands across the nation — who fall into a gray area each year. Where to best help them when an explosive outburst requires emergency care: in a mental health or more typical hospital setting?

“You can treat them and get them out but still, a lot of families at that point are beyond being able to handle things anymore,” said Dr. Michael Cummings, associate medical director in charge of the ECMC Regional Center of Excellence for Behavioral Health. “You can’t imagine how hard it is to acknowledge to yourself that leaving a child in an emergency room is better than taking them home.”

The hospital, New York State and a quartet of regional nonprofit foundations believe they have found an answer for most parents, and patients, in such shoes — the Access to Psychiatry through Intermediate Care (APIC) program, a team that makes house calls to challenged families in 17 upstate counties.

Cummings and Janell Van Cleve established APIC in late 2014. They lead a staff of six, split into pairs, which sit down with families in crisis, connect them with key medical and social services, and develop strategies to prevent avoidable emergency room and hospital stays.

The program is free for those of any age — and their loved ones. It focuses on four key areas: medical needs, alternative behavioral health therapies, creating a better home environment, and trying to free up caregivers for much needed breaks.

“If you take a mom with severely autistic child and measure her stress levels, she measures identical to an active duty combat veteran in Afghanistan,” said Cummings.

Continued

Connecticut - Once Mainly Unregulated, Behavior Analysis Increasingly Requires A License

by Josh Kovner, The Hartford Courant via Disability Scoop, July 27, 2018

A long awaited action by the Connecticut legislature has afforded parents of children with autism a level of consumer protection they never had before, and has granted to the behavior specialists in the field a degree of professionalism and responsibility that they have been crying out for since the 1990s.

Starting this month, anyone seeking to practice behavior analysis — long considered the leading approach to helping people with autism learn new skills — must be licensed by the state. And in another important signal that the field has evolved into a proven profession, licensed behavior analysts will from now on be designated as mandated reporters of suspected child abuse or neglect.

“The primary benefit of licensure is consumer protection,” said James Carr, CEO of the Behavior Analysis Certification Board in Littleton, Colo. “Parents and caregivers are going to know that they are getting someone with a defined background in the profession.”

It has been a long time in coming. Connecticut this month became the 30th state in the country to require the license.

Link to the full article

Massachusetts - Direct-Care Human Services Workers Fight Inch by Inch for Better Wages and Conditions

By Dave Kassel, The COFAR Blog, July 24, 2018

Two ongoing cases involving human services workers are illustrative of the challenges those workers face in getting decent wages and working conditions, particularly in privatized facilities funded by the state.

In both cases, the SEIU Local 509 human services union has either represented the workers or has tried to organize them to join the union.

In an interview, Peter MacKinnon, the president of the local, discussed the cases and the implications they have for care throughout the Department of Developmental Services system.

Earlier this month, workers at CLASS, Inc., a DDS-funded day program provider based in Lawrence, engaged in a five-day strike at the facility for a living wage.

MacKinnon said that although the CLASS strike ended on July 13, the contract dispute had not been resolved. The workers there are getting paid about $13 an hour and wanted a $1 increase. The company is only offering an increase of only 40 cents.

The president of CLASS made about $187,500 a year in Fiscal Year 2017, according to the state’s online UFR database. The CFO made $132,900 that year.

Last month Gov. Baker signed a bill into law that would establish a $15 an hour living wage as of 2023.

In a second ongoing case, the National Labor Relations Board filed a complaint against Triangle, Inc., another DDS day program provider, over allegations that the provider had fired some of its workers for trying to organize a vote to join the SEIU.

MacKinnon said that Malden-based Triangle recently agreed to a settlement of that case under which the fired workers will be either reinstated or provided with financial compensation, and a vote to unionize will be held early next month. He said the union is satisfied with the settlement.

Continued

Ohio - Agencies Ramp Up Efforts To Attract Direct Support Professionals

by Rita Price, The Columbus Dispatch via Disability Scoop, July 24, 2018

Public and private agencies that serve people with developmental disabilities say they are embracing various initiatives — from recruitment campaigns to longevity pay and an emphasis on the emotional rewards — to attract the workers the system so desperately needs.

“Opportunities like ours are an opportunity to change lives, as well as your own,” said Matt Hobbs of Boundless, a Columbus-based nonprofit agency. “You are the facilitator of a smile. You are the happiness in someone’s day. And with a lot of people, that really does strike a chord.”

Boundless is participating in DSPOhio, a new statewide effort to link employers and job seekers interested in becoming DSPs, or “direct support professionals.”

The DSPOhio website has job descriptions, videos and county-by-county lists of participating companies and nonprofit organizations that are looking for employees.

“We’ve got to go on the offense; we’ve got to introduce our system,” said Mark Davis, president of the Ohio Provider Resource Association. “Outside this system, how many people even know what a DSP is?”

The association launched DSPOhio with support from the state and several county boards of developmental disabilities. John Martin, director of the Ohio Department of Developmental Disabilities, said the idea was fairly grass-roots. “It was born of, ‘How do we make people more aware of this profession?'” said Martin, who once worked as a direct support provider.

Although the pay remains low, especially in relation to the responsibility, wages have increased some in the past few years, and more agencies are offering benefits. Agencies still need to do a better job selling themselves, said the provider association’s Jeff Davis.

“One of the ways in which a provider described the job was, ‘housekeeping, bathing, cooking,'” he said. “Would you want that? The job is fundamentally about supporting an individual to help them be all that they can be.”

That’s true, said Gary Tonks, chief executive of The Arc of Ohio, a statewide membership association that represents more than 300,000 people with intellectual and developmental disabilities and their family members.

But he sees no reason not to be up front about all the tasks required to fulfill the rights of people with disabilities to be safe and healthy and live with dignity. “I talk about pee and poop, about changing menstrual pads,” Tonks said. “Do that, and you get a real good sense of the quality of the (potential) staff.”

Continued

“I alone cannot change the world, but I can cast a stone across the waters to create many ripples.”    - Mother Teresa

Calendar

Our Friends at the American Health Care Association (AHCA) / National Center for Assisted Living (NCAL)

Invite you to attend the

2018 Convention

October 7-10

San Diego, CA

Tuesday, October 9 is ID/DD Day

For more information go to

www.ahcaconvention.org

Click here to view the Conference Flyer

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