July 5, 2019
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

Announcing: VOR's New YouTube Page


Speaker Videos from
VOR's 2019
These videos, the materials that we shared with Congress,
and pdfs of the state reports presented at the conference
are all available for download on our website:

City and State News:
Washington, D.C. -
‘We are Worried’:
Those Who Work with Disabled D.C. Residents Fear a City Cut Will Hurt Those Who Need Help Most
By Theresa Vargas, The Washington Post, July 3, 2019
For a moment, imagine that you couldn’t talk and were in pain.

Imagine that pain grew so intense that you ended up in a hospital, but because of a disability you couldn’t tell anyone whether your feet or your chest or your whole body ached.

Imagine you had a doctor who wanted to get you healthy and home but wasn’t quite sure what healthy looked like for you and whether your home was equipped to handle your needs.

Right now, as the result of a long-standing partnership between the D.C. government and Georgetown University, a physician who understands intellectual and developmental disabilities would show up and speak on your behalf. A nurse, trained in those same areas,
would then work to get you home as soon as you were well enough. Once home, you would receive another visit to make sure that you were okay and that your caretaker understood your needs.

These are some of the services Georgetown University provides through its DDA Health Initiative. These are also some of the services that — unless something is done soon — will disappear on Aug. 31, because the D.C. Department on Disability Services (DDS) has decided not to renew Georgetown’s contract.

The decision was made quietly and has unnerved those who work closest with the city’s most vulnerable residents.

Maine - Partisan Politics and the Forgotten Population
By Alan B. Cobo-Lewis, Bangor Daily News, June 30, 2019
A BDN editorial recently celebrated “a welcome return to normalcy” in the state budget process. But people who had been a bipartisan priority have been forgotten — and the state has failed to meet its basic obligations.

During the LePage administration, the governor blocked MaineCare expansion, and the GOP promised to keep blocking it until Maine addressed waitlists where people with disabilities were stranded.

Even though waitlists were a political football, at least there was bipartisan agreement to address them — as in this OpEd by Democrat Erin Herbig and Republican Richard Malaby, who sponsored bills in the 128th Legislature to help people with disabilities.

Yet 1,580 adults with intellectual disabilities or autism now wait for “comprehensive waiver” services, under MaineCare Section 21. DHHS has deemed about one-third of them (576 people) “Priority 2”, meaning at risk for abuse, neglect or exploitation without needed services under MaineCare rules.
Last year, the legislature committed to funding 300 people — roughly half the “at risk” group — but the money ran out after only 133. So this year, the Mills administration asked the legislature to fund the balance of 167 remaining at-risk adults. But the administration requested nothing for the other 90 percent of the people on the waitlist.

The more modest MaineCare Section 29 “supports waiver” is a safety net for people spending years on the Section 21 waitlist. Section 29 also had a waitlist from 2009 to 2015.

But late last year, the Section 29 waitlist re-emerged, and has 183 people as of this May. Yet the administration has not requested any money to address it, and the Legislature has not appropriated any.

Note: VOR disagrees with the tone of the following editorial. We support 14(c) wage certificates for people with intellectual and developmental disabilities who need these opportunities. We are printing this editorial for its content, not the idea that "Everybody can work at competitive integrated employment" that it presents.

Once again, legislators are removing options without having ensured that there are sufficient alternatives in place. Furthermore, they have determined to overlook the pleas of individuals and families that do benefit from the programs that they are closing. These people continue to take the position that they somehow know better than the people who utilize these services.
Texas Ending Subminimum Wage for Disabled Workers
By Deborah Cohen, San Antonio Express-News, June 30, 2019
Texas quietly surpassed almost all other states recently to phase out subminimum wage for individuals with a severe disability.

This means certain employers can no longer obtain certificates from the Department of Labor and pay individuals with a disability as low as pennies per hour. This is an excellent first step for our state, but it is just a first step. Now, it is time for more employers to step up and fully include all individuals in the workforce.

Championed by state Sen. Joan Huffman, R-Houston, and state Rep. John Raney, R-College Station, House Bill 885 and Senate Bill 753 were signed into law by Gov. Greg Abbott. Texas is the sixth state to pass a comparable measure. Other states and the federal government are considering similar legislation.
When Congress passed the Fair Labor Standards Act in 1938, it was intended to encourage the employment of individuals with a disability; instead, it has contributed to greater isolation and sustained a cycle of poverty. Most people were placed in sheltered workshops and never transitioned to typical employment environments.

California - State Leader Reviews Disabled Care System, Families See Changes
By Candice Nguyen, KTVU News, June 28, 2019
Assemblyman Jim Frazier, who represents parts of East Contra Costa County and Solano County, is conducting a statewide review of California's developmentally disabled care system amid complaints by families that some severe abuse and neglect cases are not being properly investigated.

Since February, 2 Investigates has exposed numerous cases of abuse. One involved a young man with intellectual and behavioral challenges who was forced to sleep on a mattress so urine-soaked it rotted the box spring. In another case, a female caretaker was sexually assaulted by a client who was already facing two rape charges.
Parents and former regional center employees told 2 Investigates last month a lack of oversight of regional centers is resulting in these cases.
Regional centers are private non-profit corporations contracted by California's Department of Developmental Services (DDS) to find and monitor care for more than 330,000 people with disabilities like autism, Down syndrome and cerebral palsy. One regional center executive director said the system is strained by a lack of funding and low pay rate for service providers. He and DDS officials have said the health and safety of their clients is a priority and efforts to increase funding are underway.

Arizona: Updates on Hacienda HealthCare
Families of Hacienda HealthCare Residents Support Troubled Facility
AZ BIG Media, July 2, 2019

Families and guardians of Hacienda HealthCare residents on Monday called the intermediate care facility a wonderful place, despite the rape of an incapacitated patient last year and moves by state officials last month to revoke its license for inadequate care.

“Losing this facility will destroy my son’s quality of life,” said Alan Strobel, a parent of a 30-year-old patient at the south Phoenix facility, said at a news conference. “Moving medically fragile patients like Logan could very well kill them.”

The Arizona Department of Health Services in June issued a license-revocation notice to Hacienda because of “inadequate patient care” after maggots were found around a surgical incision on the throat of a patient.

The state report came about six months after a 29-year-old patient at the center for people with intellectual abilities was raped and impregnated, according to authorities, by a worker. Prosecutors say a DNA test matched the baby boy to Nathan Sutherland, a nurse who was fired after his arrest. He faces trial for sexual assault and related charges.

Strobel and others who are content with Hacienda HealthCare said the incidents in December and June are “isolated events.”

Supporters “can no longer stand silent as the outstanding facility our loved ones call home, is unfairly attacked,” a news release said.

Supporters of Hacienda HealthCare said it is the best-run facility of its kind.

“There is absolutely no other place these people can go, probably, without dying,” said Karen Van Epps, a member of the Human Rights Committee of the Department of Economic Security’s division of developmental disabilities.

Hacienda HealthCare Families Fight to Keep Embattled Facility Open
By Stephanie Innes, Arizona Republic, July 1, 2019

Desperate for their loved ones to continue living in embattled Hacienda HealthCare's 60-bed intermediate-care facility, a group of families is speaking out.

"It's her home, and they know her sometimes even better than I do," said Angela Yekini, a Tempe resident whose 33-year-old sister, Christine Perez, has lived in the facility for nearly 17 years. "They know what she likes and doesn't like. Taking her out of that environment and putting her in a new place would be very traumatic for her."

Arizona has threatened to revoke Hacienda's recently acquired license as an intermediate-care facility for people with intellectual disabilities. And the federal government issued a notice to the public on June 18, saying it would be terminating the Medicaid contract for Hacienda's intermediate-care facility on July 3.

"Involuntary termination of a provider agreement is generally a last resort after all other attempts to remedy the deficiencies at a facility have been exhausted," the notice says. "We are closely monitoring the relocation of Medicaid patients to other facilities."

Christine Perez has cerebral palsy, needs 24/7 care, and has a feeding tube.

"She's fragile. I mean, if she were to get really sick, that could be it," Yekini said. "But she hasn't gone to the hospital in several years. Hacienda's just been really good at taking care of her.

"As far as I know, there's not really a comparable place out there for her to go."

The families who spoke with The Arizona Republic collectively have six loved ones in Hacienda's intermediate-care facility.

Medicaid Managed Care / State Cuts to Medicaid:
Texas - IDD LTSS Carve-In Cost-Effectiveness Evaluation – Final Report
Dr. James Edmondson has been advising VOR on the dangers of states moving their IDD LTSS services to Managed Care (See link to VOR's 2019 Conference Video here)

Dr. Edmondson brought this report to our attention, and noted that the Texas Health and Human Services Commission had found that o n printed pages 89 and 90 it shows that managed care greatly increases the cost of ICF/ID because of added layers of administrative bureaucracy. This added bureaucracy could barely find any efficiencies. The bureaucracy not only did not pay for itself but also increased overall costs.

Iowa - Providers Sign On for Another Iowa Medicaid Transition
Insurance Newswire, June 28,. 2019

Several Eastern Iowa health care providers have signed on with the new insurance company entering Iowa's Medicaid program -- a decision some officials say was driven out of necessity to serve their patients and overruled their concerns for the privatized program.On Monday, Iowa Total Care will be the latest managed-care organization to join Iowa's $5 billion Medicaid program that administers health coverage for more than 625,000 poor and disabled Iowans.

As this is not the first transition from one managed-care organization to another since Iowa Medicaid moved to managed care three years ago, some health care officials expressed concern for the long-term stability of the program.

UnitedHealthcare is scheduled to exit Iowa's Medicaid program Sunday. Iowa Total Care is set to enter the program on Monday. Here's what you need to know about the upcoming transition to the state's managed care system:

Kentucky - Dental Surgeons: Passport’s 35% Cuts to Put Strain on Health System
By Boris Ladwig, InsiderLouisville, July 2, 2019
Two Louisville dental surgeons told Insider that Passport Health Plan will cut reimbursement rates by up to 35%, which will put the state’s dental and medical systems under further strain.

The dental professionals also told Insider that the cuts ultimately will cost the state — and taxpayers — more money. They said lower reimbursement rates will prompt more dentists to stop accepting Medicaid patients, and that means more of them will seek help in already crowded emergency rooms when delayed care leads to complications, excruciating tooth aches and higher costs.

Passport’s dental contractor, Avesis, recently notified Kentucky dentists that it was making “a material change” in their agreement and that the providers could accept, reject or object. If the parties cannot reach an agreement, Avesis said it would “unwind our relationship.”
Dr. Richard A. Pape, an oral and maxillofacial surgeon in Louisville, told Insider that Avesis said it would reduce by up to 35% the amount of money dentists will receive for the service they’re providing for Passport’s Medicaid patients. 

That’s a “pretty steep cut from what’s already a pretty low rate,” he said. Pape said, for example, that Avesis/Passport have told him that they will reduce his rate for anesthetizing a patient for a wisdom tooth extraction to $67. He charges patients with private insurance about $400, and he said it costs thousands at a hospital. “You can’t provide that service for $67,” Pape said.

Alaska - Alaskans lose Medicaid Dental Benefits After Dunleavy Budget Cuts
By Lauren Maxwell, KTVA News, July 2, 2019
After Gov. Mike Dunleavy vetoed $50 million from the state's Medicaid budget last week, some Alaskans are already starting to feel the effects.

A large chunk of those cuts — $27 million — eliminates dental benefits for adults on Medicaid that in 2018 included approximately 30,000 Alaskans.

On Monday, Anchorage Dental Group began calling its Medicaid patients to tell them their dental benefits were gone. Office Manager Candace Fleming said that included some patients whose treatment wasn’t finished yet.

“So now a I have a couple of patients that we’ve started dentures on that are not going to be covered,” she said. “We just kind of have to discuss that with them personally.”
The cuts eliminate all services including preventative care like cleanings and fillings — the kind of things that Dr. James Hyer said can keep small problems from getting worse.

“And unfortunately that will lead to greater tooth loss among our poorest population who can least afford to pay for it,” Hyer said.

VOR Bill Watch:

VOR Members met with legislators and aides in their offices on Capitol Hill last month to present their objections to the Disability Integration Act , and to rally against two bills that would eliminate facility based work centers and 14(c) wage certificates - The Raise the Wage Act and The Transformation to Competitive Employment Act. We also asked our legislators to support The Autism CARES act and The HEADs UP Act.

Click on blue link to view information about the bill


H.R. 1058 & S. 427 - The Autism CARES Act - To reauthorize certain provisions of the Public Health Service Act relating to autism, and for other purposes

H.R. 2417 - The HEADs UP Act - To amend the Public Health Service Act to expand and improve health care services by health centers and the National Health Service Corps for individuals with a developmental disability as a Medically Underserved Population (MUP).


H.R. 555 & S. 117 - The Disability Integration Act - This bill has written into it the goal of eliminating "institutional care". In addition to the inherent bias against ICF's and people with severe and profound I/DD, the bill is prohibitively costly and there are not enough Direct Support Professionals to meet the provisions of this act.

H.R. 873 & S. 260 - The Transformation To Competitive Employment Act - This bill has declared the goal of eliminating Sheltered Workshops and 14(c) Wage Certificates, under the mantle of everyone with a disability is capable of competitive integrated employment.

H.R. 582 & S. 150 - The Raise the Wage Act - This bill is aimed at raising the minimum wage, but it also has provisions to eliminate 14 (c) wage certificates over the next six years and to immediately stop the issuing of any new certificates. VOR believes the issue of employment options for individuals with intellectual disabilities should not be buried in a bill for raising the federal minimum wage. Both issues deserve clean, stand-alone bills.
What's Happening In Your Community?

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