October 12, 2018
VOR Weekly News Update
VOR is a national organization that advocates for high quality care and human rights for people with intellectual and developmental disabilities
VOR promises to empower you to make and protect quality of life choices for individuals with developmental disabilities

It's October. Leaves are turning. Days are growing shorter. It's getting dark earlier.

And, it's time for VOR's Fall Membership Campaign.


Let's make our Voice Of Reason louder.
Let's make our Voice Of Reason resound.

Let's bring new members into our fold, members who have a vested interest in our advocacy.


Let's start in our family groups. Your group may have a membership in VOR, but do all of the members belong? Do all of your Board of Directors belong? If not, they may be missing our Weekly Newsletters, our Action Alerts, and our thrice-yearly print publication, The VOR VOICE. They may be missing information that will help them to become better advocates for their loved ones.

At your next Board meeting, ask members if they belong to VOR. If not, ask them if they would like to become members. Offer to buy them a year's membership. Or ask your Board to approve funds to register all of the Officers and Directors.

We promise that you will see a difference in the awareness and level of advocacy of your Board of Directors.
Please support H.R. 6786

H.R. 6786 - A bill to protect the interests of each resident of intermediate care facilities for individuals with intellectual disabilities in class action lawsuits by federally funded entities involving such residents and in Department of Justice actions that could result in an agreement to move such a resident from that resident's facility.

This is VOR's bill, and we have introduced this legislation over the course of several sessions of congress. Our sponsor, Bob Goodlatte (R-VA) is in his last term in Congress, and the bill will expire at the end of this session. Please contact your member of the House to ask them to cosponsor this important bill.

We will begin another round of this campaign on Sunday night. In the meantime, if you have not yet taken action, please click below to be a part of this important effort.


Support candidates who support our values. Donate to candidates who value our support! 
National News
Long Term Care Sector Addresses Caregiver Shortage with Innovative Workforce Resource Center
Press Release from the American Health Care Association National Conference, San Diego

Finding a qualified workforce is one of the largest challenges facing long term care providers. The American Health Care Association and National Center for Assisted Living (AHCA/NCAL) today unveiled new resources to help members attract and retain qualified caregivers in the more than 13,500 member centers nationwide. 

The online Workforce Resource Center​ includes resources and tools for AHCA/NCAL members to learn more about effective strategies for recruiting, retention and staff development. The association also announced a partnership with PHI, a leading provider of workforce training programs. PHI offers a range of services that help providers attract quality workers, promote excellent care, reduce turnover and achieve cost efficiencies. AHCA/NCAL and PHI will provide coaching, training and consulting to help long term care providers deliver quality care. 
“Our members have been clear that staffing is one of their biggest challenges,” said Mark Parkinson, President and CEO of AHCA/NCAL. “The tools we’ve developed, and our partnership with the premier organization in long term care training and development, will provide valuable resources for our members.”

State News
New Jersey - Opinion: Celebrate, Strengthen a Disability Rights Law
Thomas Komninos & Paul Aronsohn, The North Jersey Record, October 5, 2018
This week marks an important milestone in the civil rights movement for people with disabilities: the one-year anniversary of the passage of the Stephen Komninos Law in New Jersey.

Named after a young man who died almost 10 years earlier to the day — due to inexcusable neglect by his group home staff — the landmark law established policies and procedures for protecting those with intellectual or developmental disabilities. Specifically, it put in place several measures for helping to prevent further abuse and neglect in residential and day programs.

Among the most notable requirements:

  • Two unannounced site visits every year by a Department of Human Services (DHS) representative to community residential settings.
  • A two-hour timeframe for agencies to report injuries to families/guardians.
  • Injury verification within 48 hours by a DHS representative.
  • Drug testing of direct care staff.

Without question, the new law is a much-needed step forward that provides a level of oversight and accountability that has never before existed. It is also essentially the first official acknowledgment that abuse and neglect are a reality for many in the disability community.

But now, we need to take the Stephen Komninos
effort to the next level and explore additional ways to provide protections to people with intellectual and developmental disabilities.

Here are two such possibilities:

Expand the law to cover children. Currently, the law only applies to adults over the age of 21. We don’t know the reason for this age restriction, but clearly, our children deserve the same protections in their group homes and in their after-school programs. This goes without saying.

Increased use of cameras in group homes, community programs and public transportation. Many people with intellectual or developmental disabilities do not have the capacity to report bad behavior or other concerns. In fact, many are non-verbal – meaning that they have limited ability to communicate. The use of video cameras could provide a much-needed set of eyes, particularly in potentially precarious situations. This could be a win-win approach – one that could be good for those with disabilities as well as those responsible for caring for them. Such cameras are already permitted by our state government.

Illinois - Early Aging Presents Challenges For Those With Down Syndrome
by Donna Vickroy, Daily Southtown via Disability Scoop, October 9, 2018

Tom and Rosemary Ryan’s story parallels the story of Down syndrome these past 59 years.Not only has the Orland Park couple lived the joy, challenge and learning curve that accompanies raising a child with special needs, they’ve dedicated their lives to pioneering change in governmental support, educational opportunities and societal views.

“A lot has changed over the years,” Rosemary said. “We’ve come a long, long way.”

Like many parents of children with special needs, love thrust them into the world of advocacy. When there was no preschool for their son, Rosemary started one. When the concept of housing adults with Down syndrome in group homes instead of institutions was proposed, they jumped on board — landing smack in the center of a national debate and garnering the attention of ABC-TV’s “Nightline” with Ted Koppel.

And, now, as their oldest son endures perhaps the cruelest of characteristics often associated with his condition — accelerated aging — the Ryans are again at the forefront of the discussion.

Kevin Ryan is 59 but a checkup last spring revealed “he’s more like going on 70,” Rosemary said. “He’s gonna pass us up.”

Raising a child with Down syndrome is “perpetual parenthood,” Rosemary said, “if you are committed to wanting the best for them.” Now in their 80s, the Ryans, who live at Smith Crossing retirement community, are simultaneously discussing end-of-life care for themselves and for their son.

South Carolina - Leaders Calling for More Oversight of Long Term Care Facilities after Recent Neglect Cases
By Michelle Zhu, WACH-TV, October 3, 2018
State lawmakers are calling for more accountability when it comes to caring for vulnerable adults. After multiple recent cases of neglect, Senator Katrina Shealy says there needs to be more oversight of long term care facilities.
Tuesday, Richland County charged Betty Miles with neglect of a vulnerable adult after a man died at the care facility she owned. This was her fifth neglect charge. And just last month, Lexington County charged five employees of the Babcock Center for people with disabilities with abuse of vulnerable adults. Investigators say four of them failed to report abuse.

Shealy says her committee added more funding last year to hire more caseworkers to better handle situations when something is wrong. But facility workers should also speak up. Dr. Macie Smith manages care for seniors and she says abuse should be reported to investigative agencies like D.S.S., SLED, or the Department of Disabilities
and Special Needs. And there are things family members should do too to make sure their loved one is in good hands.

"Show up unannounced and show up often. Pull reports from the bed locator and see what's going on with those agencies. Talk to other parents. Look in the charts, check their medications.," said Smith.

Smith says a vulnerable adult abuse registry is needed because right now one doesn't exist.
"If someone commits abuse and they're found guilty or accused, they can go to another community and get the same type of job and evoke the same type of pain so we do need to have a vulnerable adult registry," said Smith.

Institution With Notorious History Shuts Its Doors
By Monique O. Madan, The Miami Herald via Disability Scoop, October 9, 2018

A Florida home for people with severe disabilities beset by rapes, rats and abuse — officially shut its doors over the weekend, state officials announced.The last of its 190 residents moved to a new community-based home over the weekend after years of abuse, violence and death perennially plagued the institution.

“Carlton Palms has officially closed,” said Barbara Palmer, who heads the Florida Agency for Persons with Disabilities. “We have successfully transitioned nearly 200 people from an institutional placement into community homes. With this very important move for these individuals, we believe everyone will be much happier, healthier and have an opportunity to thrive in their communities.”

Carlton Palms, run by Bellwether Behavioral Health, was the only Central Florida institution licensed to care for individuals with intellectual disabilities and severe behavioral challenges. Over the the last several months, residents have transitioned into smaller, community homes selected by their parents or guardians. Some moved back to their homes in Florida, others, out of state.
Bellwether could not be reached for comment.

The transition has been difficult, as Florida lacked both the group homes capable of supervising residents with extremely complex behavioral needs and the money to develop them.

In May, a few months after the beating-death of a 26-year-old resident, APD officials took part in the agency’s most concrete action in several years — they went to went to court seeking what is called a “receivership,” the appointment of a new leadership team to oversee the home.

Tennessee - Murfreesboro Group Home for Adults with Disabilities under Investigation, State Confirms
By Brinley Hineman, Murfreesboro Daily News Journal, October 9, 2018
The Tennessee Department of Intellectual and Developmental Disabilities confirmed that a Murfreesboro group home is under investigation.

A Murfreesboro woman reported to police on Thursday that her 41-year-old son was being abused at a group home operated by Stones River Center. The group home caters to adults with intellectual disabilities, according to the home's website. 

The woman told police she received an anonymous note that says, "This is just to inform you on 9-20-18, that your son was badly burned on his arm just incase (sic) you didn't know and (a
worker) beats on him daily. And I feel you shouldremove your son ... out of 2215 Group Home." She often saw bruises and scrapes all over her son's body, according to the police report.

The mother said the group home was under investigation, which Cara Kumari, spokeswoman for the Tennessee Department of Intellectual and Developmental Disabilities, confirmed Monday. The mother also said that an employee mentioned in the letter had been placed on administrative leave.


Opinion - Advocacy Group appears to say Persons with even the most Profound Intellectual Disability may not need Guardians
By Dave Kassel, COFAR Blog, October 9, 2018

We are questioning statements from a leading organization seeking to reduce or eliminate guardianships that imply that a guardian may not be necessary even for some of the lowest functioning people with intellectual or developmental disabilities.

In an email to me on September 27, Dari Pogach, a staff attorney with the American Bar Association’s Commission on Law and Aging, stated that decisions to appoint or terminate guardians “should not be based on diagnosis or condition.”

That statement appears to imply that an individual’s diagnosed level of disability is irrelevant in determining whether that person needs a guardian; and therefore, even the most profoundly cognitively impaired persons may not need guardians.

The ABA Commission is working with the National Center on Law and Elder Rights (NCLER) to replace guardianships with a more informal process called Supported Decision Making (SDM).

Under SDM, individual guardians are replaced by teams or “network supporters,” who enter into written agreements with disabled individuals to “help them make decisions” about their care, finances, living arrangements and other areas. The network supporters can include family members, but they can also include corporate service providers, according to the Center for Public Representation, which is pushing for SDM in Massachusetts. 

COFAR is concerned that SDM, which is part of a growing effort to reduce or eliminate guardianships, could marginalize family members in decisions made about the care of their loved ones with developmental disabilities. That’s because it is primarily family members who seek to become guardians of incapacitated persons after they reach the legal age of adulthood at 18.

Nice Story of the Week:
Residents Enjoy Add Ons to Park
By Hilary Andrews, The Log Cabin Democrat, October 8, 2018
The therapeutic park on the Conway Human Development Center’s campus has taken off in the two years since it was dedicated July 30, 2016.
While the original park was paid for and built in 1965 by the Arkansas Women’s Federation, the new addition was brought to CHDC through combined efforts from the site’s physical therapy department and the University of Central Arkansas’ Occupational Therapy Department.

Paid for by the CHDC Volunteer Council, the state and the Department of Developmental Disabilities Services, the park contains several wheelchair-accessible swing sets and a wheelchair-accessible play structure.

CHDC Superintendent Sarah Murphy said the center was also able to preserve several original park designs. “We tried to preserve little pieces but also make it functional for people we serve today,” she said.
Murphy said CHDC has 480 people living on campus who receive residential services and full-support services, the majority of whom are in wheelchairs.

The area also has a music station, drums nearby and a friendly alligator structure to touch.

“Those were some of the pieces that were UCA’s OT Dept and CHDC’s [Occupational Therapy] and Physical therapy Department to help with mobility, fine motors and sensory,” Murphy said.

“I alone cannot change the world, but I can cast a stone across the waters to create many ripples.”    - Mother Teresa
VOR Supports H.R. 6611

This bill would define individuals with intellectual and developmental disabilities as a medically underserved population, and appropriate more funds to their care. The bill will expand and improve health care and dental services for people with I/DD. Stay tuned for more information on this bill.

VOR Supports H.R. 3325

Advancing Care for Exceptional Kids Act or the ACE Kids Act

This bill amends title XIX (Medicaid) of the Social Security Act to establish a state Medicaid option to provide for medical assistance with respect to coordinated care provided through a health home (i.e., a designated provider or team of health-care professionals) for children with medically complex conditions. A state shall make payments for such health-home services regardless of whether they are provided through a fee-for-service or managed-care system. For an initial period of eight fiscal-year quarters, the federal matching rate applicable to such payments shall be increased by 20 percentage points, not to exceed 90%.

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