November 15, 2019
U.S. Capitol Building, Washington, D.C. - November 13, 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
VOR and YOU:
VOR joins with Together For Choice in Washington, D.C.
:Left to Right: Hugo Dwyer, Joanne St. Amand, Rep. Jeff Van Drew of New Jersey, and Chris Lowther of Covington Burling, legal counsel for Together for Choice.

This week, VOR's First Vice President Joanne St. Amand and Executive Director Hugo Dwyer joined with members of Together For Choice and their legal counsel to advocate in Washington, D.C. Our joint ask was for a full continuum of care, with emphasis on CMS' Settings Rule.

Last March, CMS relaxed the guidelines for the settings rule, allowing for farmsteads and intentional communities, as well as being less restrictive about proximity of waiver homes to other facilities. Unfortunately, most states are still following the 2014 guidelines promoting a more rigid adherence to inclusion and forbidding congregate settings, like intentional communities and farmsteads.
Left to Right: Together For Choice's Rosemary Huether and Mike Guerrisi, James Damon of Covington Burling - legal counsel for Together For Choice, Together For Choice's Jody Weaver, VOR's Hugo Dwyer

The Families in the picture above have had their boys at Camphill, a farmstead in Pennsylvania. Recently the boys have all aged out of the facility and been forced to move to alternative housing. Their stories are devastating. Mike and Jody's twin boys have been forced into a group home, which hasn't been a good fit compared to the farmstead. Rosemary has been forced to pay out of pocket to keep her son in a farm environment, because CMS won't cover this option.

It was an eye-opening experience for Joanne and me to see how Intermediate Care Facilities aren't the only residential options that are considered "too isolating" or "not integrated enough" for people with I/DD.

If you aren't a member of Together For Choice, please go to their website and join them today!
It's Fundraising Season!

Fall is always our best fundraising season. This year, we have set some pretty high goals. And yes, that means that you will be seeing an uptick in our pleas for donations over the next two months.

* Sigh *

To keep things interesting, we have asked some of our members to introduce themselves and their loved ones, and to see how your generous donations have been appreciated over the years.
A Note from Mary Kay and Tommy

My father taught me advocating for my brother, Tommy, meant speaking up about issues regarding what is/is not available for the Intellectually Disabled population.

Since my father’s passing, VOR has been huge in providing information and contacts that continues to help me be the best guardian I can possibly be. Making legislative contacts, learning about best/worst practices in Louisiana and other States, and learning the best way to address concerns makes me an effective advocate for Tommy and those like him. 

My advocacy currently involves dental care for adults who need sedation just to get their teeth cleaned.
Mary Kay (KK) Cowen and Tommy
Thank you for your donation!

Mary Kay and Tommy
State Commentary:
New Jersey: Group Homes Shouldn’t Supplant State Facilities for Those in Need
By Sander and Regina Fox, The SandPaper, November 13, 2019

As parents of a disabled adult male who has been a very happy resident at the New Lisbon Developmental Center since 1985, we found the Oct. 23 article regarding Community Options a most interesting read. Community Options is an organization that manages 130 group homes for those with intellectual and developmental disabilities in New Jersey, 21 in Ocean County.

Long story short, your article deals with a success story involving a particular individual whose disabilities place him within the parameters of a very thin slice of a rather large and complex pie. The term “intellectually and developmentally disabled” encompasses a range of individuals. Those, like Ted Cook, who was interviewed for the story, are capable of living alone and functioning satisfactorily in society, but others are severely disabled, wheelchair bound, unable to speak, hear, see, feed or care for themselves and require constant care just to survive.

State facilities like New Lisbon have proven over time that they have the resources, the trained personnel, and the state regulated and supervised mandates (unlike community-based facilities) ensuring the level of care necessary to meet the requirements and special needs of every resident. For those who are capable of semi-independent life, New Lisbon offers a snack bar, a greenhouse, a medical facility, a gymnasium, a community center and a work-training facility on campus, all within walking distance. A bus is provided for those who are in need of such services. What other community-based residence can offer all of those services on a very safe, secure and spacious campus?

Having literally gone through living hell for years prior to finally receiving approval for our son’s placement at New Lisbon – a facility he’s subsequently learned to accept and find comfortable and call home – we were shocked to learn of looming changes via a letter we received from then-Gov. Christine Todd Whitman in 1994. She wrote:

“One of the goals of my administration is to eliminate congregate-care institutions for people with developmental disabilities.”

And ever since, to our dismay as well as the disappointment of many parents, guardians, relatives and residents, we have witnessed a consistent yet silent effort whose primary function appears to be moving residents into community placements while simultaneously stopping any new admittances. There is no doubt that these population-diminishing efforts ultimately resulted in the closing of two of New Jersey’s facilities. The New Lisbon facility, which once (in 1969) housed in excess of 1,200 residents, is now home to fewer than 300. The fact that some disabled individuals must wait eight years for placement (according to the article), when there are vacant facilities at New Lisbon that can accommodate so many in need, is beyond comprehension.

New Jersey: Murphy has Forgotten Direct Support Professionals
By Kevin Nunez, Burlington County Times, November 13, 2019

I applaud Gov. Phil Murphy’s agenda to make New Jersey “stronger and fairer,” but I am wondering when I am going to be a greater priority on his list.

I am an active disability advocate living with cerebral palsy who has pushed hard to secure funding to raise the wages of direct support professionals (DSP). While Murphy maintained funding in fiscal year 2021 to increase DSP wages, the investment of new funding that’s desperately needed to stabilize the DSP workforce does not appear to be at the top of his agenda.

Put in the simplest terms, DSP wages are not competitive. DSPs can make more working at many retailers or fast food restaurants at jobs that require far less responsibility. If the people who support us cannot thrive, we cannot, either. This needs to change.

Far too many direct support professionals are leaving the field because they simply cannot afford to stay. They are leaving a job that is fulfilling and full of joy to save on dollars for gas. This is leaving individuals with intellectual and developmental disabilities without the supports they need to live safe, productive lives in community settings.

DSPs are my lifeline. I literally could not get out of bed without them. Their support enables me to connect with my community, contribute and make a difference. A “stronger and fairer” New Jersey is one where everyone is able to realize their potential, and for many this is reliant upon the support of DSPs.

Gov. Murphy, please include me and the 30,000 residents with intellectual and developmental disabilities who rely on direct support professionals in your vision for New Jersey.

The Coming Storm for D.C.’s Citizens with Disabilities
By Barbara Merrill and Ian Paregol, Street Sense Media, November 13, 2019
Note: Barbara Merrill is the chief executive officer at ANCOR. Ian Paregol is the executive director of D.C. Coalition of Disability Service Providers.

The $15 per hour minimum wage in the District can lift all ships, but only if the DC Council takes action this session to support people with intellectual and developmental disabilities—and forestalls a crisis facing the fragile, embattled workforce of dedicated caregivers who support them.

One of the most important decisions on the DC Council’s plate this fall is to pass the Direct Support Professional Payment Rate Act of 2019, initiated by Councilmember Brianne Nadeau. This goal of this bill is to create a tiered wage system, based on training and experience for direct support professionals—the people who assist individuals with disabilities in doing everything from bathing and taking medications, to preparing meals and participating in activities in their community.  
Ésme Grewal, former vice president of government relations at the disability provider association ANCOR, illustrated the stakes clearly this summer when she spoke to a packed room of stakeholders giving testimony in support of the bill. She said “the [direct support professionals] workforce is struggling with high turnover and vacancy rates, which makes it difficult to maintain high quality of care for individuals with disabilities.”

The DC Coalition of Disability Service Providers has also been sounding the alarm: For more than two years, it has advocated for the need to adequately compensate critical workers in the disability support field. 

State News:
Iowa - 'They're Eliminating Options': Handicapped Development Center Offers People with Disabilities a Chance to Work. As Funding Disappears, so do Opportunities
By Matt Enright, Quad City News, November 13, 2019
In a back room of the Handicapped Development Center in Davenport called the Workshop, Norman Blake helps package Wahl trimmer kits. About 80 more of the center's clients assemble small parts, label parts, and do other tasks for private companies.

For HDC clients with disabilities, like Blake, it's a chance to take pride in a job well done and earn a paycheck doing piece work a few hours a week. For the companies, HDC provides an eager labor force at a competitive price.

But the funding stream for general sheltered workshops is fading away, leaving clients at a loss, and companies with fewer options.
Carol Foster, vice president of resource development, said HDC is preparing for that future.

"So what we're trying to figure is where those 80 people that are involved in that process, what's going to happen with them," she said. "No matter what we do, we're going to cut something that's extremely important"
The board planned to cut $500,000, but that was amended to $250,000 after much discussion from the board.

What the future will bring:

Most clients will move into a day service, Foster said. That may be day-habilitation, during which the clients take outings in the community, where they can learn life skills and take part in social activities.

A few will move into HDC Enterprises, an entrepreneurial version of the workshop founded in October 2018, and designed to be self-supporting. There the highest skilled clients have part-time jobs — as HDC employees with benefits — doing similar work, Foster said.

But HDC clients must have a high skill level to work in that setting. So far, 14 are employed there, and others are being trained to do so. But some won't have the skillset to make the switch, and the workload from customers will need to grow to bring a larger number of HDC clients in as employees.

Louisiana - Suit: La. Kids Recieve Poor Mental Health Care via Medicaid
By Emily Woodruff, Daily Comet, November 12, 2019

Louisiana fails to provide children on Medicaid with adequate mental health services, according to a lawsuit filed by the Southern Poverty Law Center on behalf of five children.

The suit, filed Thursday in U.S. District Court in Baton Rouge, argues that the state has violated federal laws by failing to offer children intensive mental health services, instead relying on psychiatric institutions and the juvenile justice system to stabilize children in crisis.

One of the children involved in the suit, referred to only as C.C., is a 13-year-old girl in Houma. According to the lawsuit, C.C. received an ever-evolving set of eight diagnoses over the years with behavioral symptoms like violent outbursts, destroying property and running away from home. While on Medicaid, the 13-year-old has been institutionalized three times at hospitals up to 300 miles away from home, spending over 100 days at a time at a psychiatric institution.

The four other children named in the suit had similar issues and difficulties getting care, the suit says.

States that accept federal money from Medicaid must provide children with early screening for mental health problems so that they can be diagnosed and treated as quickly as possible, according to the Centers for Medicare and Medicaid.

That program includes mobile crisis teams and intensive outpatient services, known as wraparound services, that allow children to be treated in their own community and home, federal guidelines show.
In Louisiana, children on Medicaid have few options when they experience a mental health crisis,
according to the lawsuit. Children should have access to professionals trained in crisis prevention to de-escalate a situation and prevent parents from seeking law enforcement as a last resort. In many rural areas, there are no such centers or programs, or they have long waiting lists.

“The ... option they have is to call 911, which can result in getting juvenile justice involved,” said Victor Jones, senior supervising attorney for the SPLC. “The other option is to have the child institutionalized.”
Sometimes, that means a child as young as 6 is put into an ambulance and driven to a hospital hundreds of miles from their home, he said.

North Carolina - No State Budget, No Medicaid Transformation?
By Sarah Ovaska-Few, North Carolina Health News, November 12, 2019
The impasse in Raleigh may (again) push back what’s slated to be the biggest change to North Carolina’s health networks in decades.

On one hand, North Carolina is slated to drastically alter the health care landscape of the state with a scheduled February handoff for most of its massive Medicaid system to managed care companies. The hope is that these companies, which will be paid a capitated, per-person rate, will improve health outcomes and maybe even save money.

But, a now months-long state budget standoff between Gov. Roy Cooper, a Democrat, and Republican legislative leaders is threatening to get in the way of that start date as the opposing sides battle over the separate, but related, issue of expanding Medicaid.

N.C. Department of Health and Human Services Sec. Mandy Cohen has repeatedly said she can’t make a Feb. 1 start date work without a state budget in place by mid-November. She already nixed a plan to roll-out managed care in a portion of the state this fall over the budget delays.

Cohen also has been a firm believer in expansion, calling it “one of the most important things we can do to strengthen the health of North Carolina.”
Medicaid, through a $14 billion mix of federal and state dollars, provides health care to low-income seniors, people with disabilities, children and some of their family members. In North Carolina, that accounts for about one of every five people. It’s also one of the largest government programs run by the state of North Carolina. Its $14 billion annual cost is funded through a mix of federal and state dollars with the federal government chipping in about $2 for every $1 the state spends.

North Carolina previously used a fee-for-service model, where DHHS essentially cut checks for every flu shot, hospital stay and occupational therapist visit a Medicaid beneficiary needed.

The Republican-controlled state legislature, citing frustration over fluctuating budgets, moved in 2015 to switch to a managed-care model. Under managed care, the state would use that same pot of state and federal dollars to instead pay insurance companies or care delivery groups a per-person, per-month rate to handle each beneficiary’s entire care needs.

New York - Judge Halts Medicaid cuts to Nursing Homes across NY during Lawsuit Against State
By David Robinson, Lohud / USA Today, November 8, 2019
A judge late Thursday halted a cut to Medicaid reimbursement rates that trade groups say threatens the viability of nursing homes and patient care across New York.
The decision to grant a preliminary injunction comes after a coalition of nursing homes sued state officials, claiming they illegally cut $352 million in Medicaid funding to close unrelated state budget shortfalls.

Acting Supreme Court Justice Kimberly O’Connor noted nursing homes showed a likelihood of success on the merits of the case argued thus far.

She added the nursing homes also sufficiently demonstrated the Medicaid cuts could prompt staffing reductions, harm patient services and other financial hardships, court records show.

O'Connor wrote the facilities "sustained their burden of showing irreparable injury" if the court didn't temporarily halt the cuts during the litigation.
The case involves the formula that state regulators use to calculate reimbursement rates for Medicaid, the health-care program for millions of poor and disabled Americans jointly funded by state and federal government.

The trade groups asserted state Health Commissioner Dr. Howard Zucker and the Department of Health targeted Medicaid reimbursement rate reductions that unfairly harm nursing homes statewide.

“In granting the preliminary injunction, Judge O’Connor determined that the merits of the case were sound, and patients, workers and nursing home facilities were facing significant immediate harm," said James Clyne, Jr., president of LeadingAge NY, one of the groups suing state officials.

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VOR Bill Watch:
Click on blue link to view information about the bill


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. 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.

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.
Sponsors of the bill recently added a new summary that significantly downplays the effect the bill would have on eliminating work centers and 14(c) that benefit those who are unable to compete in the employment opportunities the bill promotes.


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).

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