February 7, 2020
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's 2020 Annual Meeting & Legislative Initiative

 Hyatt Regency Capitol Hill
Washington, D.C.
June 6 - 10
VOR's Annual Meeting and Legislative Initiative will be held on June 6 - 10th this year.
Details will be forthcoming.

If you are planning on creating a crowdfunding campaign, now is the time to begin!

Our room reservation block at the Hyatt won't open for several weeks, but it's not too early to start planning your stay and making reservations for air or train travel.
VOR and YOU:
Another Way To Donate
Over the years, VOR members have suggested that donations be made in memory of loved ones with I/DD or their family members, or to honor a member of their community who have helped in the struggle to support services for people with I/DD.

If you are interested in setting up a memorial or a tribute, please use the form on our website. This will ensure that both the donor and person setting up the donations will be notified accordingly.
National News :
This week, ANCOR and United Cerebral Palsy released their annual report "The Case For Inclusion".

Despite the title, It would appear that the movement toward community living continues to fall short of meeting the needs of those individuals with I/DD who would best benefit from community-oriented services. For those who require a higher level of care, the "Case for Inclusion" becomes a cautionary tale, emphasizing the need for a full continuum of care that includes Intermediate Care Facilities.
Nationally, Waiting Lists For Waiver Services Growing
By Michelle Diament, Disability Scoop, February 7, 2020
The number of people with intellectual and developmental disabilities across the country who are on waiting lists to receive Medicaid-funded home- and community-based services is on the rise.

There were 473,000 people on waiting lists in 2017, some 49,000 more than the year before, according to an analysis released Thursday by the ANCOR Foundation and United Cerebral Palsy.
Known as the “Case for Inclusion,” the annual report examines 58 measures to assess how well states are serving people with intellectual and developmental disabilities.

Nationally, waiting list enrollment jumped nearly 12 percent, the report found. In looking at states individually, though, the picture varied. Nine states and Washington, D.C. had no wait at all while another 10 saw their lists shrink between 2016 and 2017.

In 23 states, the waiting list grew, with the most extreme example in Texas where nearly 218,000 people were seeking services.

One issue that may help explain the lack of community-based offerings for people with disabilities is the shortage of direct support workers to assist them, the report notes. Across the country, the analysis found that the turnover rate for these workers is 43.8 percent, leaving 8.1 percent of full-time and 17.3 percent of part-time positions vacant.

States are also struggling to help people with intellectual and developmental disabilities find jobs. Since the last Case for Inclusion report a year ago, the analysis found that just 3,000 more individuals attained integrated employment, an increase of 1 percentage point, bringing the total number of people in this population who are working to 127,000 nationwide.

Trends in Developmental Disability Prevalence:
Research indicates that the prevalence of developmental disabilities among US children is on the rise.

By Rebecca Rice, Physician's Weekly, January 31, 2020

Research indicates that the prevalence of developmental disabilities among US children is on the rise. Recent studies tracking the growth of developmental disabilities among children are lacking, explains Benjamin Zablotsky, PhD. “Researchers know that measuring the prevalence of developmental disabilities in the population helps gauge the adequacy of services and interventions,” he adds. With the rise of diagnoses, Dr. Zablotsky led a team examining demographic and socioeconomic characteristics connected with developmental disabilities.

For a study published in Pediatrics, the researchers assessed the prevalence of 10 developmental disabilities in children aged 3 to 17 using the National Health Interview Survey:
• Autism spectrum disorder
• Blindness
• Cerebral palsy
• Moderate to profound hearing loss
• Learning disability
• Intellectual disability
• Seizures
• Stuttering or stammering
• Other developmental delays

Dr. Zablotsky and colleagues used the survey to track demographic and socioeconomic characteristic changes during 9 years (2009-2017). Data analyzed included parent-reported data from approximately 90,000 children.

Significant increases occurred between 2009 to 2011 and 2015 to 2017 in the overall prevalence of developmental disability (16.2%-17.8%). “Universal screening by 18-24 months and ongoing monitoring of a child’s development, as recommended by the AAP in 2007, likely accounts for some of the increases seen in prevalence,” Dr. Zablotsky notes. ADHD prevalence increased from 8.5% to 9.5%, intellectual disability from 0.9% to 1.2%, and autism spectrum disorder from 1.1% to 2.5%. However, there was a noticeable decrease in other developmental delays (4.7%-4.1%) during the same years.

14(c)Wage Certificates & Work Centers:
ACCSES Responds to Questions from U.S. Commission on Civil Rights, Office of Civil Rights Evaluation regarding 14(c) Wage Certificates and the need for Facility Based Work Centers
By Kate McSweeny, ACCSES. January 14, 2020


" Every individual working under a Section 14(c) certificate does so by choice and has other options available, including day activities. In some cases, individuals work part-time in competitive employment and round out their weeks working under a Section 14(c) certificate in a different job. In other instances, individuals have tried competitive employment and have not been successful or have missed working in a community setting that they enjoy. You asked how we know that individuals want to keep their jobs. Let us pose this question in return: Is that a question you ask people in your offices, your families, or your friends? We must stop treating people with disabilities as if they were some unique group that allows everyone else to have a vote on how they live their lives. Every person with a disability is an individual.

"People with disabilities" are not a monolithic group where everyone thinks the same or believes the same or has the same goals or options. Nor are they a monolith eligible to choose only from a limited menu that other people think is best for them. Please stop buying into the idea that individuals have fewer rights to choose their own course. We know individuals with disabilities want to keep their jobs because they choose to work and because we have heard it from many self-advocates. No one wants to lose their job and threatening 14(c) adds stress to individual lives without any upside. Let us work together to expand options, not take them away."

State News:
Pennsylvania - Lawsuit Seeks To Keep Institutions Open
By Harold Brubaker, The Philadelphia Inquirer via Disability Scoop, February 4, 2020

Family members and 13 residents of Polk Center and White Haven Center filed a federal lawsuit to block the Wolf administration from closing the two facilities for adults with severe intellectual and developmental disabilities, alleging that the plan violates the residents’ rights under the Americans with Disabilities Act and other federal laws.The Pennsylvania Department of Human Services announced the closures, expected to take three years, in August. The centers, in Luzerne and Venango Counties, are among four remaining state centers. They have about 700 residents, down from more than 2,000 a decade ago, reflecting the nation’s long-term trend toward community-based care.

The plaintiffs in the Polk and White Haven lawsuit, filed last week in U.S. District Court for the Middle District of Pennsylvania, “seek the enforcement of their federal rights to prevent their severe injury, including extreme mental distress, gross physical harm, and even possibly death.”

The 36-page proposed class-action lawsuit says community-based providers failed some of the plaintiffs.
The Human Services Department said it does not comment on pending litigation.

New York - Parents Fight to Keep Key Autism Therapy when Kids Enter NYC Schools
By Michael Elsen-RooneyNew York Daily News, February 3, 2020
Parents argue a one-on-one therapy approach to autism is the best method available for toddlers, and are taking their fight for it to court for thousands of children in New York City preschools and elementaries.

Applied Behavior Analysis, which breaks up tasks into small steps and teaches skills through rewards and repetition, is “the most well-researched and validated general approach to treatment for [Autism Spectrum Disorder],” officials from the state health department wrote. It’s administered frequently to 0-3-year-olds in the state’s Early Intervention system.

But after age three, thousands of kids — many of whom thrive under the approach — are suddenly forced to drop ABA in city preschools and elementary schools, , where it’s rarely offered, according to parents and advocates.
A group of parents has now filed a class action lawsuit against the city and state education departments charging the lack of ABA violates federal special education law.

“It’s devastating to see these families desperate, to hear the stories of regression, and to know that it was clearly preventable,” said Elisa Hyman, the special education lawyer representing the families in the lawsuit.

“In my view, it’s blatantly illegal for the department to adopt a blanket policy whereby it refuses to consider, or provide, ABA services,” Hyman added.

Colorado Vowed to End the waitlist for an Adult Disability Program by 2020. Nearly 3,000 People are Still Waiting
By Moe Clark & Jennifer Brown, The Colorado Sun, February 4, 2020
Like most people in their 20s, Brennan Froehlke wants to move out of his parents’ house and share a place with friends. His parents, Margaret and Bob Froehlke, have been meticulously planning for the day for more than 12 years. That’s how long ago they signed up for a developmental and intellectual disabilities program –– called the DD Medicaid waiver –– that would provide 26-year-old Brennan, who has Down syndrome and autism, with 24/7 care and would enable him to live with the support he needs outside the family home.

“We have worked hard to make a plan for Brennan, but we can’t act on it until we get the waiver,” said Margaret Froehlke, Brennan’s mother and primary caregiver. “We can’t set a timeframe or goal. We have no answers, and we don’t know if we are planning for a pipe dream. It’s very frustrating.”

“… I haven’t lost hope. I know a lot of families have, maybe I should, too,” she added. “But I believe that the state is going to come through because it’s the right thing to do.”

Six years ago, Colorado lawmakers set 2020 as the year the state would clear the waitlists for all Medicaid waiver programs for people with disabilities. That didn’t happen. In 2014, when lawmakers crafted the plan, analysts predicted it would cost $190 million per year for five years to end the waiting. The legislation, however, did not come with automatic funding.
At the time, a combined 10,862 children and adults were waiting for one of six programs, which range from occasional in-home help and transportation to round-the-clock care.

Today, there are still 4,213 people waiting for a waiver –– 2,895 of them for the DD Medicaid waiver, the most intensive program for adults. 

The average wait time is now eight years for that waiver –– down from 15 in 2014, when the law was passed. The number of people waiting for the waiver almost doubled in the same period, to 2,895 people from 1,454.

But, in good news, as the waitlist has grown, so has the number of adults enrolled in the program. Today, 6,029 individuals with developmental or intellectual disabilities receive the DD waiver, up from 4,848 six years ago. 

“The developmental disabilities waiver, because it is so comprehensive in terms of providing residential support, is especially important in terms of providing families with the security that their loved one will be cared for into the indefinite future,” said Ellen Jensby, public policy director for the disabilities advocacy group Alliance Colorado.
The adult, round-the-clock program is the most expensive of all the waiver programs, with an expected cost of $507 million this fiscal year.

Virginia - Some with Disabilities can live on their own with a little help. But Virginia is falling behind on its promises to do more.
By Dave Ress, The Daily Press, February 1, 2020
Virginia is behind on its promises to help more people with intellectual or developmental disabilities live on their own instead of in large institutions or group homes, a new review shows.
But for the lucky few who get the help they need to live in their own apartments, that independence is priceless.

The state’s promises came seven years ago, when it pledged to boost community services as part of a settlement with the U.S. Department of Justice, which had accused Virginia of violating the rights of people with disabilities who lived in state training centers.

The latest independent review of Virginia’s compliance with the settlement, completed in the fall, found the state still doesn’t have enough community services staff, hasn’t been able to make local community services boards and private
providers adhere to its standards for care, and has no standards for implementing services aimed at behavioral issues. Officials are also transferring people to large group homes or nursing homes before getting the proper approvals, the review found.

The deadline for full compliance is the end of 2020, but the review found it will take Virginia much longer to have in place one crucial promised piece in place: teams that will monitor the quality of care, including how well deaths of clients are investigated.

Texas Poured Nearly $1B into New Special Ed Funding Following IDEA Violations
By Naaz Modan, Education Dive, January 31, 2020
A new report released this week by the Texas Education Agency shows the state increased its special education funding by nearly $1 billion over a four-year period, with the latest expenditure at $4.02 billion for the 2019-20 school year.

The state has drastically increased its special ed funding after a federal investigation and media reports showed Texas in violation of IDEA, or the Individuals with Disabilities Education Act, when it arbitrarily capped the number of students with disabilities it served at 8.5%.

The TEA report also shows the state increased the number of students with disabilities it served by 54,710 over a two-year time period. It also increased by 56% the number of students with disabilities it evaluated during that time period,
from 88,962 in the 2016-17 school year to 138,543 in 2018-19.

According to state data, the percentage of students with disabilities Texas serves has increased to about 9.25% in 2017-2018, up from 8.5% in 2015. But the less than 1% increase means the state still remains below the national average of 14%. 

A federal investigation in 2018 prompted by a series of reports from the Houston Chronicle found Texas in violation of IDEA, or the Individuals with Disabilities Education Act, when the state arbitrarily capped the number of students with disabilities it served at 8.5%.

VOR has been very concerned about changes to the Medicaid program over recent years, as our family members with I/DD rely so heavily on this program for essential long-term supports and services (LTSS). The ACA expansion of Medicaid has added millions of people to the system, expanding care in some states, while straining resources in others. The move towards privatization, or Managed Care, in recent years has caused great concern for many Medicaid recipients, and VOR members are rightly concerned about the impact of states expanding Managed Care to cover LTSS services.

The Trump Administration has recently promoted a program by which states may elect to participate in Block Grants or Per Capita Caps, ideas that were rejected by congress a few years ago as a mandatory change in Medicaid policy. (The first article below covers this subject) Recently, the administration has proposed a realignment of how if pays states under its Medicaid Fiscal Accountability Regulation. This program currently would not affect the I/DD population as much as the elderly population that relies on Skilled Nursing Facilities, but advocates fear the program could expand, the cuts could trickle down to other Medicaid recipients as states struggle to meet their budgets. (See articles 2, 3, and 4 below)

In addition to these federal policies states are faced with their own challenges in adapting these changes to their own Medicaid infrastructure. (See articles 5, 6, and 7 below).
Medicaid Change Prompts Worries About Disability Services
By Michelle Diament, Disability Scoop, February 3, 2020
Disability advocates are decrying a Trump administration plan to alter Medicaid that they say could ultimately compromise services that people with disabilities rely on.

The Centers for Medicare and Medicaid Services released a proposal late last week giving states the option to accept fixed payments from the federal government to cover some Medicaid expenses. In exchange, states would gain more control over the parameters of their programs.

Traditionally, the federal government has provided states with unlimited matching funds to help pay for Medicaid. Accordingly, payments to states have gone up and down to account for changes in program enrollment and expenses. If states pursue the new option, that would change, leaving them to weather more of the ups and downs on their own.

As proposed, the plan would only apply to a portion of the Medicaid program affecting adult beneficiaries under age 65 who aren’t eligible due to a disability or their need for long-term care. The change would not pertain to home and community-based services for people with developmental disabilities.

Federal Medicaid officials said that people with disabilities would only be affected by the “improvements that result from states reinvesting savings to improve and sustain Medicaid for everyone.”
However, disability advocates say that by allowing states to accept set payments for any portion of the Medicaid program, the Trump administration is opening the door to future changes and threatening the financial stability of the program as a whole.

“It is very clear that this is another attempt by the administration to cut and cap Medicaid,”
said Kim Musheno, vice president of public policy at the Autism Society of America. “While this proposal is limited to the Affordable Care Act Medicaid expansion program, we worry that this proposal lays the groundwork for further cutbacks like those proposed in the president’s previous budget plans and previous congressional proposals that were defeated in Congress.”

Republicans have long sought to convert Medicaid to a block grant program — where states would receive lump sum federal payments each year for all their beneficiaries — or a per capita cap system where the federal government would provide a fixed amount for each beneficiary no matter the true cost of their care.

Advocates say the current plan is a first step toward achieving that goal.

Governors Warn Trump Rule could Lead to Big Medicaid Cuts
By Ricardo Alonso-Zaldivar, Associated Press, February 6 ,2020
Governors of both major political parties are warning that a little-noticed regulation proposed by President Donald Trump’s administration could lead to big cuts in Medicaid, reducing access to health care for low-income Americans.

The arcane fiscal accountability rule proposed by the Centers for Medicare and Medicaid Services, or CMS, would tighten federal oversight and approval over complex financing strategies states have long used to help pay for their share of the $600 billion program. Also targeted are certain payments to hospitals that treat many low-income patients. Public comments closed last week amid a chorus of criticism from hospitals, nursing homes, insurers, doctors, and advocates for the poor.

Against the backdrop of an election year, governors are warning the administration of potentially dire consequences.

“States may be unable to adequately fund their Medicaid programs, which could lead to unintended consequences that would negatively impact Medicaid beneficiaries across the country,” wrote Govs. Kate Brown, D-Ore., and Charlie Baker, R-Mass., in official comments on behalf of National Governors Association.
More Stories:

But CMS administrator Seema Verma says the vast health care program needs closer scrutiny and has expressed concerns about “shady” financing schemes that abuse the system and drive up taxpayer costs.
In a statement Wednesday, Verma said her agency recognizes the “critical importance” of the state financing but said it has to lead to better value and improved care for Medicaid beneficiaries. Under the proposed rule, “we are increasing transparency, integrity and clarity,” she said. An agency spokesman said the rule is not intended to reduce Medicaid payments.

But the policy comes from an administration that has repeatedly moved to scale back Medicaid. Trump has tried to repeal the program’s Obama-era expansion, supported block grants that would cap federal spending, and allowed states to impose work requirements on Medicaid recipients.

The latest proposal could lead to cuts of $37 billion to $49 billion a year in total Medicaid spending, or 6% to 8% of program funds, according to a study by Manatt Health consultants for the American Hospital Association. Payments to hospitals could be cut as much as 17%.

A CMS spokesman said the agency doesn’t believe those estimates are credible. In the rule, CMS says that the fiscal impact of its plan is “unknown.” Critics say the agency did not do a full analysis.

Oregon - Merkley Presses Administration to Drop Medicaid Cuts
From KTVZ-21 TV, February 6, 2020
Sen. Jeff Merkley, D-Ore., demanded Thursday that the Trump administration reverse course on a proposed rule change that threatens to take away Oregon Health Plan benefits and coverage from one in five Oregonians who currently rely on the program. The new rule proposes significant funding cuts to providers and states, he said in a news release, which continues below.
The Centers for Medicare and Medicaid Services (CMS) have admitted that the broad and complex proposed rule change, which would alter how states finance their share of Medicaid, and how state Medicaid programs will provide payments to hospitals, nursing homes, and other health care providers, will have “largely unknown” fiscal effects.

“Based on OHA’s analysis, this proposed rule could cut approximately 60 percent of state and federal financing for Oregon’s Medicaid system,” Merkley wrote. “In order to maintain current funding with CMS’ proposed changes, Oregon would need to generate $1.3 billion per year in general fund dollars through increased state taxes.”

“If finalized, this rule would significantly undermine Oregon’s ability to finance its Medicaid program, further sabotaging health care for Oregonians and vulnerable communities. Accordingly, I request that this proposed rule be withdrawn in its entirety,” Merkley concluded.

CMS Proposal would be ‘Major Financial Burden’ for CCRCs, Residents, Organizations Say
By Lois A Bowers, McKnight's Senior Living, January 17, 2020 (updated January 31, 2020)

A Centers for Medicare & Medicaid Services regulation effectively proposing new Medicaid taxes could “lead to a major financial burden” for continuing care retirement communities and residents — and even the closure of skilled nursing units within CCRCs — in 18 states, according to the heads of LeadingAge and the National Continuing Care Residents Association, who sent a letter this week to members of Congress in the potentially affected states.

The Medicaid Fiscal Accountability Regulation would disallow longstanding provider tax exemptions and discounts for some CCRCs, also known as life plan communities, despite the fact that the “vast majority” of residents pay for care in CCRCs out-of-pocket, not using Medicare or Medicaid funds, LeadingAge President and CEO Katie Smith Sloan and NaCCRA President Jim Haynes said.

LeadingAge has identified 18 states that currently exempt CCRCs from the tax program or levy a discounted tax on the communities.

CMS announced the so-called MFAR on Nov. 12 “with the intent of promoting financial integrity in state Medicaid programs,” Sloan and Haynes said.

“While we appreciate CMS’ efforts to do so, the MFAR proposal as written does more harm than good and would have dangerous implications for residents and providers of CCRCs,” they added.
Although the exact cost of the new taxes would vary by state and by community, the amount “easily” could reach six or seven figures each year, Sloan and Haynes said. “Thus, the CMS MFAR proposal could lead to a major new financial burden on CCRCs, and older Americans could face higher out-of-pocket costs if those communities were to pass the cost to the consumer via higher entrance fees and/or monthly fees,” they said.

Of greater concern, however, LeadingAge and NaCCRA said, is that CCRCs in the affected states may decide to reduce or do away with their skilled nursing beds rather than incur the additional tax burden, believing that it is not financially sustainable to operate a nursing home within their continuum.
Sloan and Haynes requested that senators and representatives ask CMS to withdraw or revise the proposal “to protect CCRCs and their residents.”

Arkansas - Managed-care Change Stands to Hit AR Hospitals - Drop in Payments Proposed
By Andy Davis, Northwest Arkansas Democrat-Gazette, February 3, 2020
An initiative putting managed-care companies in charge of the health coverage of thousands of Arkansans with expensive health needs has come with a side effect for hospitals: a proposed reduction of nearly $31 million in a type of payment they receive from the state Medicaid program.

The Arkansas Hospital Association has objected, prompting state officials to seek guidance from the federal Centers for Medicare and Medicaid Services.

"We've got hospitals taking millions of dollars of reductions in this that will not be sustainable to those hospitals," association chief executive Bo Ryall said. "It will put them in a very difficult position and a financial burden."
The potential reduction is in supplemental payments designed to make up for the low rates the Medicaid program has traditionally paid hospitals.

The state Department of Human Services has proposed the cuts because the federal government doesn't allow states to provide such supplements for payments made by managed-care companies.

Under the state's managed care initiative, three such companies last year became responsible for providing health coverage to about 45,000 Medicaid recipients with significant mental illness or developmental disabilities.

‘Major Flaws’ as Illinois Transitions Former Foster Children to Medicaid Managed Care
By Peter Hancock, Capitol News Illinois via The Southern Illinoisan, Feb 4, 2020
An estimated 2,500 children and young adults in Illinois who had been in the custody of the state’s foster care system within the last year abruptly lost their health coverage on Feb. 1.

That was just one of many problems that occurred over the weekend when the state shifted some 19,000 former foster children into its privatized “managed care” health coverage system.

Children’s advocacy groups warned Tuesday that more problems may lie ahead as the state works to move approximately 17,000 current foster children into that same system.

“These are not glitches, these are major flaws,” Danielle Gomez of the Cook County Public Guardian’s office told a state Senate panel Tuesday. “I am not sensationalizing the issue when I say that children will die as a result of the stubborn resolve to continue moving forward.”

Illinois began transitioning its Medicaid program from a traditional fee-for-service model to managed care in 2011. Under managed care, the state contracts with a number of private insurance companies and pays them a flat monthly fee for each patient they enroll.
In turn, the companies, known as managed care organizations, or MCOs, are supposed to manage those patients’ care by making sure they have complete health screenings and regular checkups. MCOs are also supposed to coordinate care between the patient’s primary doctor and any specialists they need.

Today, nearly all regular Medicaid recipients in Illinois are enrolled in a managed care plan. But there have been widespread reports of MCOs denying claims and delaying payments, often because their enrollment with the MCO wasn’t completed correctly or the provider that a patient went to see wasn’t in the MCO’s network.

But two groups the state did not immediately put under managed care were current and former foster care children, a population that includes victims of abuse and neglect, many of whom have highly complex physical, mental and behavioral health issues.

New York - Long-term Care Facilities Can't Absorb More Medicaid Cuts
By Stephen B. Hanse, The Buffalo News, February 5, 2020

New York State has a long-standing tradition of taking care of our neediest residents. It’s part of who we are. For tens of thousands of elderly, frail and physically challenged New Yorkers – our parents, relatives, neighbors and friends – that care is provided in hundreds of skilled nursing facilities around the state, facilities that cannot survive without Medicaid funding.

As elected officials and policymakers in New York work to address huge Medicaid funding shortfalls, they need to recognize that long-term care facilities are not what is driving Medicaid spending increases.  

In fact, the opposite is true: Over the past dozen years, long-term care providers have seen funding cuts of nearly $1.9 billion, including nearly $800 million in cuts over the past six fiscal years. Eleven years have passed since these care providers have received any cost of living increase, even as employee wages and health care expenditures, and food and utility costs have continued to rise. 

So it is no surprise that New York now leads the U.S. in the Medicaid shortfall, the difference between the amount Medicaid reimburses providers and the actual cost of providing care in skilled nursing facilities. We have been struggling financially for years – and we simply cannot absorb more cuts.

Most of our long-term care facilities are operating close to capacity, and our residents are coming to us with greater medical and other care needs than in the past.

What is an Ombudsman?
Ombudsman Observations: What is an Ombudsman?
By Scott Hardin, Muskogee Phoenix, February 6, 2020

I am often asked, “What is an ombudsman?” It is not a commonly used word. What it means in general terms is an advocate or representative. Specifically, a long-term care ombudsman is an advocate for residents of long-term care facilities. 

These facilities include nursing homes, assisted living and residential care facilities, and intermediate care facilities for individuals with intellectual disabilities (ICF-IID). An ombudsman visits these facilities on a regular basis and speaks with residents and staff regarding the residents’ satisfaction with the facility and the care they are receiving there. Ombudsmen also can handle complaints from residents and their families involving a wide range of issues including food, care, family conflicts and resident rights, to name a few. 

The ombudsman can advocate on the behalf of the resident and their wishes and can also help them speak up for themselves. The ombudsman strives to work with facility staff and administration in order to resolve issues and find solutions for resident complaints. 

In addition, your local ombudsman can be a valuable resource regarding nursing home rules and regulations, how to choose and pay for long-term care, long-term care options counseling and other issues related to long term care.

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]
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.

Money Follows the Person Renewal (Authorization and Appropriations) - Money Follows the Person (MFP) has been a popular program that has helped many people to move from congregate care into smaller, settings. Unfortunately, it has been used by some states to force the closure of ICFs and move people into "integrated" settings without their consent. We ask that MFP not be renewed until this and other shortcomings have been remedied. MFP has passed through Congress by voice votes, without discussion of these problems.


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. 5443 & S. 3220 - Ensuring Access to Direct Support Professionals Act -
To amend title XIX of the Social Security Act to clarify that the provision of home and community-based services is not prohibited in an acute care hospital, and for other purposes.

H.R. 1379 & S. 560 - Ensuring Lasting Smiles Act - To require that group and individual health insurance coverage and group health plans provide coverage for treatment of a congenital anomaly or birth defect. (i.e. Cleft palate, ectodermal dysplasia, etc.)
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