OP-ED: Trump's Trump's Medicaid Plan Would Force Draconian Choices On People With DD

By Maureen Gaynor

Maureen Gaynor (updated photo)

Dread. Our President has embedded dread into my vision of what my daily existence may be like in the near future. You see, I am a woman who has severe athetoid cerebral palsy.  I depend on people to assist me in just about every physical aspect of my life.  More about my own situation in a moment, but I am not alone in this feeling of dread.

There are about 4,200 people in Rhode Island who have developmental disabilities, according to the state, and we all depend on Medicaid, which supports programs to assist us in living our lives as inclusively as possible.

But President Trump has proposed a budget that would decimate Medicaid.  By capping Medicaid spending, President Trump would cut an estimated $610 billion to $1.3 trillion over the next decade, with the higher figure also taking into account the effects of the health care bill that recently passed the House. When I look up ‘decimate’ in the dictionary, it means to “kill, destroy, or remove a large percentage or a part of.” That is a word used to describe wars, plagues and atrocities that should be avoided at all costs to preserve human life. Let’s take a good, hard look at the very real effect these astonishing budget cuts would have on people with disabilities, starting with my own case.

I have done my hard work getting where I am today.  I come from a hard-working family that respects hard work and also values the concept of the family down to the core. My parents, who never got degrees but valued education, expected all of their four children to go to college, and they succeeded in that goal.  I was the one who drew the short straw when I was born a half century ago.  But I have learned not to let my cerebral palsy define me. And I wasn't given a free pass out of being successful.  I wanted to be successful, and that drive is even stronger today.  I became convinced that I could design buildings and residential homes to be more accessible for the disability community. In 1990, I graduated from New Hampshire Technical College with a General Associates degree in Building Construction Technology, followed by graduating from Roger Williams University with a Bachelor of Science degree in Architectural Studies. Unfortunately, jobs have been sparse since 1993.  Given my education and experience in the construction field, and my love in designing kitchens, I am pursuing work in kitchen design.

But my cerebral palsy DOES limit what I am able to do, physically, for myself. As I said, I depend on people to assist me in just about every physical aspect of my life. Activities like eating meals, dressing, showering, brushing my teeth, doing laundry, using the bathroom and a multitude of other activities I need assistance completing. I need someone to adjust the head pointer I am using to write this article.  All of these activities of daily living are needs—my needs are not “luxuries.”  I need to eat, or I will starve.  I need to use the bathroom, or I will get severely ill.  I need to shower, or I will smell.

President Trump, along with his Secretary of Health and Human Services, Tom Price, want to impose Medicaid Block Grants on all states, based on each state’s per capita ratio.  This means the federal government will allocate a pre-determined Medicaid budget for each state.  Each state must work within that budget.  Each state has its own Medicaid budget.  People with disabilities have different levels of need.  How is such a strict Medicaid budget going to cover all of the variable needs of people with disabilities?  President Trump has difficulty understanding the Constitution, let alone the needs, and the dreams, of people with disabilities.  I am convinced that President Trump hasn't sat down and had a genuine conversation with a person with a developmental disability.  Dread sets in once again.

So, what would my life under a Medicaid Block Grant system?  My dread comes from the expectation that services will be severely cut back, because the state will not be able to make up for the federal cutbacks and will have to stretch out the available dollars by reducing services to everyone. Here’s what I fear will happen to me:

 My supports to find employment will immediately disappear.  My hopes and dreams centered around working as a kitchen designer would be dashed because I wouldn't have any community hours.  Instead, that money would have to be spent on supports for someone else to get out of bed.

My daily community supports would cease. Getting out of the house would be another “luxury” for people with disabilities. If I cannot go to the supermarket, how would I buy groceries?  Well, I guess I will have to find someone who will shop for me.

If these devastating Medicaid cuts pass and my services are reduced, I would need to stay in bed three hours longer each day,  because I can’t get up on my own and there would be no one to help me.  I would have to go at least 14 hours without eating.  By the time I would get up, I’ll probably eat around 1 pm.  What would I eat—breakfast or lunch?  I would have to eat a lot because I would only have time to eat two meals a day.

 If I’m not mistaken, don't prisoners get three meals a day?  I think they do.  I, who never committed a felony, who was born with a brain disorder, and who has graduated college from Roger Williams University will be only allowed to eat two meals a day because President Trump dreams of building this “magnificent” wall on the Mexico border.

Can somebody tell me where the fairness in this scenario?  If I was face-to-face with the President, Tom Price or Paul Ryan, Speaker of the House, could anyone of them explain to me where the fairness is?  I don't think anyone of them could give a reason why it is more important to have a border wall rather than providing people with disabilities adequate time to eat three meals a day, and to have a life that they can call their own.

My biggest fear is the re-emerging of state institutions if these Medicaid cuts go through.  Medicaid money would run so thin that there will not be any other choice to care for the vulnerable people with disabilities by re-creating “collective housing” to care for their basic needs.

We cannot allow this administration to turn back the hands of time on the progress the disability community has made in the last century. The mindset of this administration is deplorable. We must rise up as a country and recognize all people must be treated equal.

Maureen Gaynor, of Smithfield, RI, is a social activist. She was one of four people who were arrested in Sherborn, Mass. on Inauguration Day, Jan. 20, after a reading of grievances against President Trump and a peaceful procession that blocked a road, prompting police to stop traffic. Gaynor can be reached at mogaynor@cox.net

One In Six DD Jobs in RI Goes Unfilled; Raises Would Ease Crisis and Improve Service Quality

image by capitol tv 

Kevin Nerney of the Rhode Island Developmental Disabilities Council, left, and Maureen Gaynor, second from right, share pleasantries just before their testimony before the House Finance Committee on Feb. 8. Looking on are Gaynor's support worker, Melanie Monti, and Emmanuel Falck of the Service Employees International Union State Council.  Image by RI Capitol TV. 

By Gina Macris

Raising the pay of Rhode Islanders who serve adults with developmental disabilities is not only about helping these poverty-level workers pay their bills, according to testimony before the House Finance Committee Feb. 8.

The proposed raises also will reduce staff turnover and, in turn, improve the quality of life for some of the state’s most vulnerable citizens, Donna Martin, executive director of the Community Provider Network of Rhode Island (CPNRI), told the legislators. 

Kerri Zanchi, the new director of the Division of Developmental Disabilities, agrees with Martin’s assessment. Zanchi says the pay hike is not only an “investment in the direct service professional, but an investment in our community" and in high quality services.  

She estimates that the wage increase will amount to an average of 42 cents an hour, and says that provider agencies are now experiencing a staff turnover rate of about 33 percent.

Carol Dorros, the mother of a 21-year-old man with behavioral issues and other complex problems, knows firsthand the value of support staff retention. When her son was still in high school and receiving some adult services from a private agency, his support worker changed four times during a single academic year. As a result, he made “no progress” from September to June, Dorros said.

 Maureen Gaynor rolled up to the speakers’ table in a power chair and used a computerized voice to speak the text she had written with a “headstick,” a pointer attached to a band around her head.

These people deserve higher pay, Gaynor said, explaining that support staff sometimes must help with the most intimate care, such as bathing, dressing and using the toilet.

And she reminded the legislators that she would not have been able to attend the hearing without an aide willing to drive her to the State House and get her to the basement hearing room.

After she spoke, Kevin Nerney of the Rhode Island Developmental Disabilities Council reinforced her remarks:  “When you help someone eat, drink or bathe, you need to have a really good relationship with that person. We’re not talking about folding shirts at the Gap or flipping burgers at McDonald's,” said Nerney.

At AccessPoint RI, a service provider, the starting salary is $10 an hour, or $22,000 a year, said the agency’s executive director, Tom Kane. The average pay was $10.82 an hour until the current fiscal year, when the General Assembly set aside $5 million for raises for developmental disability workers – the first pay increases since 2006, Kane said.

The added funding resulted in a 36-cent hourly increase, raising the average to $11.18, according to calculations made by service providers and others.

When Kane reviewed the the roster of employees at the time his agency processed the raises last fall, he said he was heartbroken to find a 30-year employee who was to receive a total of $13.10, with the pay bump.

Kane and others indicated they believe that a “15 in 5” campaign to raise the pay of direct care workers to $15 in five years (by July 1, 2021), is simply not enough.

Kane alluded to a drive launched by State Sen. Louis DiPalma, D-Middletown, last fall when he asked Governor Raimondo to include a raise for direct care workers in her budget proposal for the next fiscal year.. While she has done so, her $6.2 million set-aside for wages is about $$600,000 shy of what DiPalma requested.

Kane said raises should not only be based on a percentage increase.

 “A four or five percent increase on an insufficient wage is an insufficient increase,” he said.

If the minimum wage increases to $10.50 an hour, as Governor Raimondo has proposed, “and we give 5 percent” raises, Kane said, “we’re paying minimum wage again.”

Kane took issue with figures presented by Linda Haley of the House Fiscal Staff that the raises in the current budget also bumped up pay for supervisory personnel.

He said the raises all went to direct care workers, (as stipulated in current state budget.)  Some agencies, including AccessPoint, used other funding sources to provide raises or bonuses to supervisory employees.

At AccessPoint, Kane said, front-line supervisors spend half their time doing direct care anyway.

“It is incredibly important that this bill passes, hopefully with more money in it,” to support not only those providing direct care but people who perform other important tasks, like writing clients’ state-mandated individual support plans, which are akin to road maps for services that are specific to each client. Most of these employees “have not had a raise in 11 years,” he said. “I don’t know why they stay.”

Emmanuel Falck of the Service Employees International Union (SEIU) State Council represents 270 workers at the Arc of Blackstone Valley. One of them, a 52- year-old woman with 20 years’ experience in the field, used to be able to make ends meet by working 60 to 65 hours a week, he said.

But after an 18-month bout with cancer, the most she can now work is 20 hours a week. And the last vacation she had was three days in Washington, D.C., in 2000, Falck said.

He said the proposed 42-cent increase to the hourly rate would be much appreciated, but the state needs to move faster to raise workers’ pay to a living wage.

“I urge this committee to bump it up as fast as possible,” he said, proposing a $15 hourly wage by 2019 instead of 2021. As it is, direct support workers living in Rhode Island will be able to cross the state line to neighboring Massachusetts and do the same work for $15 an hour on July 1, 2018, Falck said.

Donna Martin, the CPNRI director, said that developmental disability service providers face a “tremendous crisis” in competing for the same pool of workers who serve elderly clients, thanks to a growing number of aging baby-boomers.

On average, the 27 providers belonging to CPNRI cannot fill one in six job openings, creating a vacancy rate of about 16 percent, she said. During exit interviews, workers say that they love their jobs but can’t feed their families with what they are paid, according to Martin.

As a result of the vacancies, employers are forced to spend money on overtime that they would rather put into worker pay and training, Martin said.

“I appreciate your sensitivity to the struggles of our staff,” Martin told the finance committee members.  “They are where the rubber meets the road when it comes to quality.”

Chris Semonelli of Middletown, the father of a 14-year-old girl with autism, put some historical context around the discussion of the wage proposal.

From 2006 through 2011, the budget for developmental disability services was reduced 20 percent, Semonelli said, quoting a profile of the system written by the Sherlock Center on Disabilities at Rhode Island College in 2013. And the services are not designed with an eye toward results. In the current design, more money gives more of the same service, he said.

That said, Semonelli said he strongly supports Governor Raimondo’s proposed wage increase in the next budget, as well as the “15 in 5” campaign. The governor’s plan for the next fiscal year “is a start,” said Semonelli, who also is co-director of an advocacy group called Friends of the Disabled on Aquidneck Island.

Although Wednesday’s hearing sounded like a budget discussion, it focused only on Article 23 – one of 24 chapters in the overall fiscal package Raimondo has submitted to the General Assembly.

The provision would require a one-time increase in the base pay of direct care workers, “in an amount to be determined by the appropriations process” and also require the Office of Management and Budget to perform an audit to ensure that the raises go only to those workers. 

RI House Finance Chairman Asks Whether DD Services Really Need Money; Gets Emphatic Yes in Reply

Maureen Gaynor uses assistive technology to testify before the Rhode Island House Finance Committee May 26. She says people with disabilities want the same thing everyone else does; a job, a role in their communities, and purpose in their lives. To her left is Lisa Rafferty, executive director of Bridges, a disability service provider.

By Gina Macris

Rhode Island’s developmental disability agency needs more revenue in the next fiscal year because it will not come close to saving a target of $16.2 million in group home expenses, the agency’s director, Maria Montanaro, told the House Finance Committee in a hearing May 26.

Montanaro emphasized that after eight years of cost-cutting in the developmental disability budget, the state now needs to add revenue to ensure that Rhode Island residents who live with intellectual challenges get the Medicaid-funded services to which they are entitled by law.

The Committee chairman, Rep Marvin L. Abney, (D-Newport), wasn’t necessarily convinced by Montanaro’s testimony, asking rhetorically, “Is money really the problem?” 

ABNEY                                          Image by Capitol TV

“We’re going on and on and on and on,” Abney said. “I’ll leave you with this thought. It’s not a question, but we are concerned,  is money really the problem? When we’re talking about efficiencies to the system, is money always the answer to that? You don’t need to respond, but just think of that as a director,” he said.

Montanaro did not reply, but other witnesses did say a lack of money is a key factor in ongoing federal court oversight of the state’s compliance with a two-year-old consent degree in which Rhode Island agreed to bring its disabilities services in line with the Americans With Disabilities At (ADA).

The agreement, with the U.S. Department of Justice, requires the state to enable more persons with disabilities to work in regular jobs, rather than in “sheltered workshops.” The decree also requires the state to help persons with disabilities participate in other community-based activities.

In an order issued May 18, Judge John J. McConnell, Jr. laid out 22 short-term deadlines the state must meet. Missing even one of them could trigger a contempt of court hearing. If the state is found in contempt, the judge would require the state to pay a minimum of $1,000 a day for violations of the consent decree, or as much as $1 million a year.  

The first requirement in McConnell’s order is that “the State will appropriate the additional money contained in the Governor’s budget for fiscal 2017 in order to fund compliance with the Consent Decree.”

The subject of the House Finance Committee’s hearing was Governor Gina Raimondo’s proposed budget amendments for the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH),  for 2016-2017 fiscal year, which begins July 1.

In all, Raimondo has requested $18.7 million in added revenue for developmental disabilities, offset by an accounting shift of $1.8 million in home health aide services from BHDDH to the Executive Office of Health and Human Services.

Also on the table is a proposal for about $6.8 million in additional appropriations in the current fiscal year to address a current budget deficit in developmental disabilities. 

If the General Assembly approves the supplemental appropriation, the bottom line in BHDDH’s Division of Developmental Disabilities would increase from $230.9 million to $237.7 million before June 30. Raimondo’s request for an additional $16.9 million in the coming fiscal year would push the overall disabilities budget up to $254.6 million, with about half that amount coming from state coffers. 

In fiscal 2016-2017, Raimondo seeks to make up $10.2 million of the $16.2 million she originally envisioned saving in reduced group home costs.

The governor also wants an additional $9.2 million in funding to raise salaries for staff who work with adults with intellectual challenges, or $4.1 million more than she asked for in February. 

In addition:

• $180,000 would be set aside for an ombudsperson to protect the rights of persons with developmental disabilities

• ·4.4 million would be restored to the BHDDH budget to prevent the inadvertent loss of professional services like occupational and physical therapy for some persons with developmental disabilities.

All the money comes from Medicaid, with a roughly dollar-for-dollar match in federal and state spending.

Montanaro, the BHDDH director, said adequate funding of developmental disabilities in the next budget would prevent BHDDH from running a deficit every year.

The developmental disability caseload, 4,000 to 4200 annually, also should be included in calculations of the state’s semi-annual Revenue and Caseload Estimating Conference to prevent unexpected surprises in the budget, she said. 

Montanaro                                                               Image by Capitol TV

The twice-yearly conference is a forum for top fiscal advisors to the Governor, the House and the Senate to reach consensus on the state’s revenues and Medicaid caseload expenses for the coming budget year.  

Montanaro said the $9.1 million in raises for direct care workers are necessary to satisfy the consent decree.

Without being able to offer higher pay, the private agencies that provide most of the direct services won’t be able to re-direct their efforts toward supporting their clients in jobs as the consent decree requires, Montanaro explained.

Workers make an average of about $11.50 an hour, often less than the clients they support in jobs in fast food restaurants, according to testimony at the hearing.

BHDDH originally counted on achieving $16.2 million in savings in the next fiscal year by convincing hundreds of group home residents to move into less expensive shared living arrangements with individual families, Montanaro said.

However, that effort has encountered resistance by individuals and families who find safety and security in group home living, she said.

Since BHDDH began what Montanaro described as a “full court press” on shared living at the beginning of this year, 10 group home residents have moved into private homes with host families, according to BHDDH statistics.

There are now 288 adults with developmental disabilities in shared living – an option that has been available for a decade in Rhode Island – and about 1300 persons living in group homes in Rhode Island.

Tobon                                                           Image by Capitol TV 

When Montanaro originally testified in January about the plan to shift to shared living, it was in the context of closing a projected $6 million deficit in the current fiscal year.

Recalling that testimony, Rep. Carlos E. Tobon, (D-Pawtucket), a Finance Committee member, said he had been “really concerned” about the timetable.

“You had to sit over there and pretty much, not  convince us, but tell us that this is what you were going to do,” Tobon said. “What was your confidence in actually achieving that?”

“I think I was very clear with the committee that it was a very aggressive approach,” Montanaro replied.

“But the problem, Representative, that I want you to understand, is that we are mandated by (state) law to come up with a corrective action plan” to close a budget deficit, she said.

The choice was either to continue the eight-year pattern of cutting benefits or eligibility, while the federal court watched “the crumbling of that system,” Montanaro said, or to try to get savings by encouraging persons with disabilities to move into more integrated living arrangements.

Montanaro described it as a “Sophie’s Choice,” a dramatic allusion to a forced decision being forced to decide between two terrible options.

 “We knew we might have to come back and tell you our actual experience with that,” she said alluding to the fact that the short-term shared living effort has fallen far short of the goal.

 A gradual shift toward shared living is in keeping with a broad, long-range federal mandate to desegregate services for individuals with a variety of disabilities, but it does not address the Rhode Island consent decree, Montanaro said.

 
In the past several months, as the federal court watched BHDDH spending nearly all its efforts to try to save more money instead of working on the employment requirements of the consent decree, Montanaro said, the judge and the court monitor in the case became “very worried.”

The monitor, Charles Moseley, has said that timing is critical.

Unless the state meets certain benchmarks now, Moseley has said in reports to the court, it will not be able to fulfill the long-range requirements of the consent decree, which calls for a ten-year, system-wide shift from segregated to integrated day time supports for adults with developmental disabilities to comply with the ADA. The decree, signed April 8, 2014, expires Jan. 1, 2024. 

Montanaro said that concerns of the monitor and the judge over the state’s emphasis on cost-cutting instead of the consent decree requirements prompted a recent court order that spells out conditions under which Rhode Island could be fined as much as $1 million this year for contempt. 

In her testimony before the House Finance Committee, Montanaro drove home her point.

“The last thing I’ll say about it is that we really can’t afford to direct all of our departmental activity toward an effort that isn’t actually the effort that the consent decree is obligating us to pay the most close attention to, which is the employment issue,” Montanaro said.

“Judge McConnell and the court monitor want to see the state of Rhode Island make the necessary financial investments in transforming the system, and you can’t transform everything at once,” she said, alluding to Moseley’s concerns about timing.

Montanaro continued to explain, but that’s when Abney, the committee chairman, interrupted, asking his rhetorical question: “Is money really the problem?” 

Later in a hearing that lasted nearly two hours, Tom Kane, CEO of a private service agency, and Kevin Nerney, associate director of the Rhode Island Developmental Disabilities Council, each told Abney that “it is about the money.”

Nerney said, “Whether I think it’s about money, or whether anyone else thinks it’s about money, there’s a federal court judge that thinks it’s about money, and the Department of Justice does, as well.”

Kane, CEO of AccessPoint RI, said “The reason the DOJ is here is a money problem,” he said. “We have jobs available for people (with disabilities) waiting to work,” he said, but providers of developmental disability services can’t hire the support staff “to make that happen,” he said.

Of 77 job applicants at AccessPoint RI during the month of April, 35 refused a job offer because of the low pay, Kane said. “They tell me they can make more sitting home collecting” unemployment benefits, he said.

Serpa                                                  Image by RI Capitol TV 

As he has testified at previous State House hearings on the developmental disabilities budget, Kane said private service providers operate at an average loss of about $5,000 a year for each person they employ. 

Rep. Patricia A. Serpa, (D-West Warwick, Coventry and Warwick), asked whether executives of developmental disability agencies have received raises while their workers have been paid low wages in recent years.

Kane said he gave all AccessPoint RI employees a 3 percent raise in January, the first time since 2006. At the start of the 2011-2012 fiscal year, after the General Assembly voted to cut $24 million from the developmental disabilities budget, everyone took a 7.5 percent pay cut, he said.

Donna Martin, executive director of the Community Provider Network of Rhode Island, CPNRI, said all the member agencies that cut pay that year started at the top.

A review of IRS reports from organizations exempt from taxes shows that executives of developmental disability agencies with budgets less than $5 million make 25 percent less than those of other non-profit agencies in Rhode Island, Martin said.

In developmental disability agencies with budgets greater than $5 million, the executives make 30 percent less than those of other non-profit organizations in the state, she said.

Kane, meanwhile, asked the committee to think of the governor’s budget proposal as a “jobs request.”

KanE                                                    ImAge by Capitol TV 

Kane submitted a copy of research done by the University of Massachusetts Amherst which indicates that every million dollars invested in disability services in Rhode Island creates a total of 25 jobs. Based on that research, Kane said later, the $9 million Raimondo has requested to raise pay for direct care workers would translate into a total of 225 jobs.

Kane also said the state should “braid” funding from BHDDH with the Office of Rehabilitation Services of the state Department of Human Services (ORS) to fund “employment teams” that would be more effective than the two agencies working separately to try to do the same thing.

That idea came out of recent discussions between state officials and private agencies about a system-wide redesign of services, Kane said.

Bob Cooper, executive secretary of the Governor’s Commission on Disabilities, said he would add the state Department of Labor and Training (DLT) as another “braid” in Kane’s analogy.

Federal rehabilitation dollars channeled through DLT reimburse the state 78 cents for every dollar the state spends; a better deal than the 50-50 match from the Medicaid program, he said.

The federally-funded Disability Employment Initiative, a workforce development demonstration grant run by DLT, “was making a difference” before the grant ended and the program shut down March 30, Cooper said.

If the state is to comply with the consent decree, disability-related job supports involving BHDDH and ORS must be merged with DLT, the state’s primary economic development agency, Cooper said.