February 15, 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 Action Alert

Join us to Ask Congress to Exclude ICFs from the
Money Follows the Person Rebalancing Act Renewal

Money Follows the Person (MFP) is a federal grant program that has been used by states to incentivize the closing of Intermediate Care Facilities for Individuals with Intellectual Disabilities (ICFs). Members of Congress are working to extend MFP for an additional number of years. 

On paper, MFP is about choice. In practice, that is often not the case. MFP overrides family decision-making and choice when states close state-run ICFs and finance the closings with MFP dollars. MFP also negates the choices of individuals and their families when states use MFP dollars to incentivize providers to close private ICFs.

We urge legislators to carve out ICFs from the MFP program so that the health care choices of ICF residents can be protected.

You can help protect ICF care. Please act TODAY by contacting Congress to ask them to remove ICFs from any future legislation to extend the MFP program.  Just click below to access a pre-formatted letter that can be automatically sent to the appropriate Congressional leaders.
National News:
States Skirting Obligation To Cover ABA Therapy
By Courtney Perkes, Disability Scoop, February 14, 2019
Despite a federal mandate nearly five years ago, several state Medicaid programs are still failing to cover treatment like applied behavior analysis for children with autism, advocates say.

In 2014, the Centers for Medicaid and Medicare Services issued a bulletin telling states to pay for “medically necessary diagnostic and treatment services” for kids with autism, but stopped short of directly requiring ABA therapy.

However, advocates say that because some children on the spectrum require ABA, every state should offer coverage to those who do. Most states have since done so, but some legislatures have not allocated funding, even though they’ve passed laws that require private insurers to cover ABA therapy.

“That inequity does not look good,” said Lorri Unumb, vice president of state government affairs
for Autism Speaks. “It’s just critical that family finances not be a barrier to children being able to get this critically important intervention as soon as possible.”

The states that do not offer ABA therapy to all children who meet medical necessity criteria are: Idaho, Illinois, Maine, New Jersey, New York, Ohio, Oklahoma and Texas. ABA therapy uses reward-based motivation to help children with autism learn new skills and reduce harmful behavior.

Congress Considers Renewal Of Autism Act
By Michelle Diament, Disability Scoop, February 11, 2019

Lawmakers are looking to secure over $1 billion in the coming years for federal efforts to address the needs of people with autism, including additional support for adults on the spectrum.

A bill introduced late last week in the U.S. Senate and House of Representatives would reauthorize the nation’s primary autism legislation known as the Autism Collaboration, Accountability, Research, Education and Support, or Autism CARES, Act.

The measure, H.R. 1058, would ensure continued federal support for everything from autism research to prevalence tracking, screening, professional training and other initiatives.

Without action from Congress, the current incarnation of the Autism CARES Act — and the $260 million annually associated with it — is set to expire Sept. 30.

State News:
Connecticut - New Report Misleads about Southbury Training School
By John Hirschauer, Danbury News-Times, February 10, 2019
Recently the newspaper ran a piece highlighting an ANCOR Foundation report that ranked Connecticut 31st out of 50 states plus the District of Columbia in its care for persons with intellectual and developmental disabilities (I/DD). There is much to be fixed in Connecticut’s network of care for individuals with I/DD, but the premises used by ANCOR in its formulation of its state rankings are ideological in part and are not without bias.

There are metrics in the report worth taking seriously — for instance, the number of families and individuals waiting for services and the average cost of caring for clients are useful measures of a state’s I/DD services — but the report takes great pains to demonize what it calls “large state facilities.” The quality of care at those “facilities,” and the satisfaction of the residents and families who are served there, are never mentioned, let alone quantified. The mere fact that such services exist in a particular state is presented as a stand-alone indictment of that state’s care network for persons with I/DD.

I am a volunteer at the Southbury Training School. In my own experience as a volunteer, I have seen the outstanding care provided by staff and the support offered by my fellow volunteers to the population at Southbury.

Many of the residents who remain at Southbury are profoundly medically or behaviorally involved and have lived at STS for the majority of their lives. Some cannot speak, others are blind or deaf, and still others utilize feeding tubes and require
24/7 medical services. Those guardians and family members with loved ones at Southbury with whom I have spoken are deeply grateful for the care that their loved ones receive and worry that arbitrary reports like this one will be used as a pretext to close the care community at STS and move their loved ones into inappropriate placements.

In 2016, more than 300 persons in Connecticut with intellectual and developmental disabilities were inappropriately placed in non-I/DD nursing homes. This number is likely similar today and stands as a serious indicator that our state’s system is, in many ways, broken. Southbury is a far better option for that population and ought to be made available to them and their families, not closed or de-emphasized.

It is a wonderful thing that those who can or desire to live in HCBS-waiver settings have that right, and the state ought to continue to expand such services for individuals for whom it is appropriate. But the families at Southbury, and those families on the waiting list for services whose loved ones might benefit from the intensive medical or behavioral supports offered there, deserve to be “included” in the “Case for Inclusion” report as much as those whose needs differ.

Massachusetts - Provider Transparency Bill tops COFAR Legislative Priorities
By Dave Kassel, The COFAR Blog, February 13, 2019

A bill requiring the Department of Developmental Services to post online comparative information about the performance of residential providers and abuse allegations against them tops the list of bills that COFAR is proposing for the new 2019-2020 session of the state Legislature.

Last week at a hearing held by the Massachusetts Developmental Disabilities Council (MDDC), we presented a list that includes that bill and four other proposed bills that were filed last month.
In doing so, we joined a number of other advocacy groups and individuals at the MDDC hearing in advocating for legislation dealing with issues affecting the developmentally disabled. We’re in support of most of the proposed legislation put forth by other groups, but we have reservations about some of the proposals.

This bill, which is at the head of our list this year, is modeled on an online database system in the state of Illinois. The bill would require the Massachusetts Department of Developmental Services to provide comparative information on the department’s website about group home providers [and] offer comparative information about group home provider performance. In addition, that agency provides online reports on the numbers of abuse allegations and abuse substantiations made against individual providers in the state. Such information has the potential to help families and guardians in making informed decisions about placement of their loved ones in DDS-funded facilities.

The DSP Crisis:
For several years, VOR has commented and advocated on the shortage of qualified Direct Support Professionals (DSPs) to meet the demand for services for people with Intellectual and Developmental Disabilities.

The crisis continues to grow, and there will be no end to it until significant changes are made to the way we treat the women and men who pursue careers in this field.

The most important change is wages. DSP wages are tied to the federal minimum wage, which is lower than the minimum wage offered in many states. But the responsibilities and job-related stress of DSPs far exceed the demands of most minimum wage workers. To attract more DSPs, CMS needs to offer wages that are significantly higher than the wages paid to fast-food workers. DSPs deserve to make a living wage without having to take a second or third job or rely on overtime to make ends meet.

The position of Direct Support Professional needs to be treated the same as any position in the health care field. There needs to be a career path, an opportunity for growth, and compensation for education and training. At the same time, there need to be standards for background checks and greater accountability among workers and providers to prevent and report incidents of abuse and neglect.

This week, several articles came to our attention on the subject:
Missouri: A Workforce in Crisis, Arc of the Ozarks describes a growing need for DSP
By Heather Lewis, Ozarks Tonight, Feb. 13, 2019
Direct Support Professionals provide care to those with intellectual or developmental disabilities. That workforce is seeing a 60% turnover rate. Executive Vice President of The Arc of the Ozarks, Tim Dygon said it's largely because the median wage in the field, nationwide, is $9.71. With minimum wage rising in Missouri, he said unless the government allocates more money, they will see even more of a shortage in caregivers. 

"Our DPS staff, nationwide, 52% are on public assistance programs," Dygon said. "32% are on medicaid and 31% receive food stamps. So really, raising the wages really makes sense, right? So,
we're taking medicaid money to work with people with disabilities and then employing people to beon medicaid. It doesn't make sense. Raising the wages would not only help taxpayers, it would help people with disabilities and all the providers that work so hard to make sure that they're taken care of."

New Hampshire - Medicaid Rate Increase Needed Now to Reverse Erosion of N.H.'s Direct-Care Workers
By Rebecca Bryant, Laconia Daily Sun, Feb 8, 2019

As the CEO of a nonprofit charged with providing critical social services to some of our region’s most vulnerable citizens, I’m often asked what keeps me up at night. The complexity of providing community-based services 24/7 could make this a very long answer. However, the current workforce crisis and its implications for the future are by far the root of an ongoing nightmare.

Many direct support professionals (DSPs) who provide safe, meaningful support to people with disabilities and brain injuries work 60, 70, even 100 hours per week at a job with significant mental and physical demands. Turnover rates reach 30 percent some months. Hourly workers put thousands of miles each year on their personal vehicles with a mileage reimbursement rate far below the federal allowance. More and more local entry level jobs in the hospitality, food service and retail sectors offer $15 per hour to start. Because of a budget cap, a career professional DSP can’t ever earn more than $15 per hour. The starting hourly wage is just over $12.

Why is the pay so low for people who do such difficult and important work in our community? Simply put, Lakes Region Community Services and the other area agencies in New Hampshire who support people with developmental disabilities, have not seen a Medicaid reimbursement rate increase in 13 years. A recent report showed that as of September 2018, there were 234 vacant positions for direct support staff statewide. Even those with a genuine calling for caregiving are opting out of the field in favor of positions that offer better pay, incentives and less stress.

New York - #BFair2DirectCare Movement Takes on Downtown Binghamton
By Matt Paddock, WICZ Fox 40 News, February 8, 2019

Achieve and local Arc chapters hosted a #BFair2DirectCare Rally on the Broome County Courthouse lawn on Friday. Over 100 people rallied together to call on Governor Andrew Cuomo to "fulfill his promise of years 3 and 4 livable wage funding for Direct Support Professionals". 

Direct Support Professionals work with individuals with developmental and intellectual disabilities but due to being paid such low wages many of these workers are either forced to do countless hours of overtime or pick up a second or third job just to keep food on the table for their families and pay bills.

Governor Cuomo pledged six years of cost of living to fund to be included in each State Budget starting in 2018, but it wasn't included in the 2020 budget address and the #BFair2DirectCare are calling on Cuomo to stand by his word and include Direct Support Professional funding in his "30-day amendments".

Amy Howard, Achieve CEO says “In our field were on the verge of a workforce crisis statewide… DSP’s are making wages that are not allowing us to retain them in terms of employment in our organizations”.
“So many of our DSP's earn wages that are not able to allow them to sustain for their own families and needs... so we find many of them work second jobs, numerous overtime hours and they really need to do more just to satisfy their own means and the needs of their families... it's really important we can lift their wages so they can meet their own individual needs and so we can also retain them as employees”

Maryland - Dozens Speak Out on Fight for $15 Legislation
By William J. Ford, Washington Informer / Black Press USA, February 9, 2019

Kara Brummell works five days a week assisting adults with mental and physical disabilities to help them seek employment.Sometimes Brummell must budget at least $60 a week for gas to drive clients around to various businesses along the Eastern Shore. Personally, she receives less than $15 an hour taking care of her 3-year-old son as she resides with her brother and his family.
“I’ve been hit, I’ve been cursed at, I’ve had people run away from me,” said Brummell, 33, an employee transition specialist. “But I’ve built trust with them and their families. It’s important work me and my colleagues do.”
Brummell and dozens of direct support professionals, health care workers, advocates and others testified Friday for proposed legislation to gradually increase Maryland’s minimum wage to $15 an hour.
Economic Matters Chairman Dereck Davis (D-District 25) of Mitchellville said 174 people registered to speak at the hearing.
The designated slogan, “Fight for $15,” almost became a reality last year but a version in the more conservative Senate didn’t move forward. With about one-third of the Senate changed this year, it’s believed the long-awaited legislation may finally pass.

Massachusetts - Concerns Raised About Support Staff Shortage For Developmentally Disabled
By Barbara Howard, All Things Considered, WGBH, Feb. 8, 2019

It takes a lot of hands to provide direct help for those with intellectual and developmental disabilities. But now, there is a shortage of those hands — the head of the agency that runs a statewide program called The Arc of Massachusetts is worried about staffing levels. Leo Sarkissian is executive director of the Arc. He spoke WGBH All Things Considered Anchor Barbara Howard.

Follow up on Facility-Based Employment (Sheltered Workshops):
Eliminating subminimum wage waivers will harm hundreds of thousands of people with disabilities
By David Ordan, The Hill, 08/10/18

Report on the Impact of the Conversion from Sheltered Workshops to Integrated Employment
The CHIMES Foundation and The George Washington University Release a Case Study on Maine Public Law Chapter 101, The Business JournalJun 24, 2015,

VOR Bill Watch

There are currently seven bills in Congress (four in the House of Representatives with three companion bills in the Senate) that would discriminate against the more disabled members of the IDD community. We are following them closely, and over the next few weeks/months may ask our members to sign on to Action Alerts to share our objections with our elected officials. (Click on each bill to view details)

H.R. 260 This bill has provisions to extend the Money Follows the Person Rebalancing Program , which has been used as a tool to remove people from ICFs with the intention of shuttering the facilities.

H.R. 555 & S. 117 - The Disability Integration Act - This bill has written into it the goal of eliminating "institutional care".

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.
What's Happening In Your Community?

Is there an issue in your loved one's home that you need help with?
Do you have information or a news story you would like to share?
Is there legislation in your state house that needs attention?

Contact us at [email protected]
Notice: Meetings of the President's Committee for People with Intellectual Disabilities (PCPID)

The Administration for Community Living announced earlier this week that there will be two meetings in March to prepare their 2019 report to the President. Currently, the report is a self-congratulatory piece on their work to move all individuals with IDD to full integrated employment, close sheltered workshops, eliminate 14 (c) wage certificates.

In their discussions, one member of the committee have raised the matter that some individuals will never be able to participate in competitive integrated employment and that the opportunities for work that these individuals currently enjoy will be taken away from them, resulting in their spending hours every day on the sofa watching television or being driven in a van to the mall. Nonetheless, the committee plans to move ahead with the elimination of these programs.

What has happened to our system, that the people charged with protecting and providing services for the IDD community have turned their backs on the most severely disabled members of that community?

The PCPID meetings are open to the public, though the public is not allowed to comment. The schedule for these meetings is:

Monday, March 4 - 11:00 a.m. to 12:30 p.m. (EST) . This is a virtual meeting, via telephone. Members of the PCPID may speak, the public may listen in. To attend the meeting, dial (888) 949–2790 and use pass code 1989852.

Thursday, March 21, and Friday, March 22, from 9:00 a.m. to 4:30 p.m. (EST) (same time both days)
Hubert H. Humphrey Building, 200 Independence Ave. SW, Room 800, Washington, DC 20201 . The public is invited to attend, but not comment, or to listen in remotely, at (888) 949–2790 using the pass code 1989852.

The American Health Care Association / National Council for Assisted Living

AHCA/NCAL’s Annual Hill Fly-In Event
Wednesday, March 6, 2019

AHCA/NCAL’s Intellectual and Developmental Disabilities (ID/DD) Residential Services Providers will be in Washington, D.C., for our annual Hill Fly-In event on Wednesday, March 6, 2019.

Participants will hear from Congressional speakers and others. The event runs from 8 am – 10:15 am ET. After the morning event is over, the ID/DD providers will head to Capitol Hill to discuss critical issues, including Medicaid.

If you have any questions relating to this event or would like to attend (it is free to attend for anyone interested, and breakfast and lunch are provided), please don’t hesitate to contact AHCA’s Senior Director of Not for Profit & Constituent Services,  Dana Halvorson .  

VOR's 2019

June 8 - 12, 2019
Hyatt Regency Capitol Hill
Washington, D.C.

Plan now!
This will be an important year for I/DD advocacy
836 South Arlington Heights Road #351 Elk Grove Village, IL 60007
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