RI DD Public Forum Highlights Personal Choice, Inclusive Initiatives For Redesigning Services

Deanne Gagne                                                                                                                                                                                                                                           all photos by anne peters

By Gina Macris

During a public forum on Rhode Island’s developmental disability services Aug. 8, Deanne Gagne talked about the importance of personal choice in improving quality of life, for herself and others. 

“It’s really about the person in the center who’s driving the vehicle,” not the service system defining the options, said Gagne, a spokeswoman for Advocates in Action, a non-profit educational organization which encourages adults with developmental disabilities to speak up for themselves.

For Gagne on that day, personal choice turned out to be about the spontaneity of doing somethingmost adults take for granted: making a lunch date.

After the meeting, Gagne connected with an old friend who also attended the forum at the Coventry Community Center.

Because Gagne controls the way she uses her service dollars, she did not need to discuss with anyone how she and her wheelchair would get to and from the chosen restaurant.  Gagne’s assistant simply pulled Gagne’s cell phone out of the bag that hangs across the back of her chair and handed it to Gagne, who marked the date, time and place in her calendar and handed back the phone. That was that.

As a speaker during the forum, Gagne summarized the message of recent public sessions hosted by  Advocates in Action, in collaboration with the state and the Sherlock Center on Disabilities at Rhode Island College, on thinking “outside the system” or “outside the box” in planning for the future.

“It’s back to basics,” she said. “What do you want to do with your life, and what do you need to make that happen?”

Both a 2014 consent decree and a new Medicaid rule on Home and Community Based Services (HCBS) put personal choice at the heart of mandated changes in the approach to services. All developmental disability services in Rhode Island are funded by the federal-state Medicaid program.

One parent who has attended a recent Advocates In Action session on personal choice, or “person-centered thinking”, said there’s a long way to go before such a change becomes everyday reality.

“It seems like a giant step to get from where we are now to where we’re going,” said Greg Mroczek, who has two adult children with developmental disabilities.

None of the developmental disability officials who hosted the forum disagreed with him.

Zanchi           

But Kerri Zanchi, the director of the Division of Developmental Disabilities, and her administrative team made it clear that they want the public to participate in creating a new system of services in a much more active way than is the norm when bureaucracies adopt change.

Kevin Savage, director of licensing, who leads a continuing effort to rewrite developmental disability regulations, said, “We want to have regulations that are meaningful to participants and their families.” The committee rewriting the regulations, which began working in the spring, includes representation from consumers and family members. Savage said a draft of the proposed regulations should be completed in September and released for public comment later in the fall.

Also on Aug. 8, the Division put out a new call for individuals interested in serving on an external quality improvement advisory council.

The advisory council would complement an internal quality improvement committee as part of a broad effort intended to make sure services are faithful to the requirements of the consent decree and Medicaid’s Home and Community Based Rule. 

Anne LeClerc, Associate Director of Program Performance, said she would field inquiries about the quality improvement advisory council. She may be reached at 401-462-0192 or Anne.LeClerc@bhddh.ri.gov.

Zanchi, meanwhile, yielded the floor to representatives of a fledgling effort to revitalize family advocacy called Rhode Island FORCE (Families Organized for Reform, Change and Empowerment), an initiative of the Rhode Island Developmental Disabilities Council.

Semonelli

Chris Semonelli of Middletown, a leader of the group, said it aims to become a springboard for legislative advocacy, starting with an exchange of ideas in the fall among those affected by the developmental disability service system. A date for the event, entitled “Coffee and Cafe Conversation,” has yet to be announced.

The Developmental Disabilities Council plans to support the family advocacy group for up to five years, until it can spin off on its own, according to Kevin Nerney, a council spokesman. Anyone seeking more information may contact him at kevinnerney@riddcouncil.org or 401-737-1238.

Francoise Porch, who has a daughter with developmental disabilities, touched on a long-standing problem affecting both the quality and quantity of available services: depressed wages.

“Direct care staff can’t make a living working with our children,” she said.

The General Assembly allocated $6.1 million for wage increases in the budget for the current fiscal year, which Governor Gina Raimondo signed into law Aug. 3 after the House and the Senate resolved an impasse over Speaker Nicholas Mattiello’s car tax relief plan, which emerged intact.

Although the language of the budget says the raises are effective July 1, the fiscal analyst for developmental disabilities, Adam Brusseau, could not say during the forum exactly when workers might see retroactive checks.

The extra funding is expected to add an average of about 56 cents an hour to paychecks – before taxes – but the precise amount will vary, depending on the employee benefits offered by private agencies under contract with the state to provide direct services.

The latest raise marks the second consecutive budget increase for direct care workers and the first in a five-year drive to hike salaries to $15 an hour.

For high school special education students anticipating a shift to adult services, “there seems to be a logjam” when it comes to families trying to figure out how many service dollars they will have and how far the money will go, according to Claire Rosenbaum, Adult Services Coordinator at the Sherlock Center on Disabilities at Rhode Island College.

Rosenbaum

Zanchi said the Division of Developmental Disabilities aims to administer assessments that are used in determining individual budgets a year before an applicant leaves high school and needs adult services.  But Rosenbaum said that based on her contact with families of young adults, a year does not appear to be long enough. 

She elaborated: after the assessment, called the Supports Intensity Scale, families must wait a month or more for the results. Only then can parents explore the offerings of various agencies.  They may settle on one agency, only to be told that the agency is not accepting new clients with their son or daughter’s particular need. Then, when families decide to design an individualized program themselves, they must begin planning all over again.

“A year is not enough,” Rosenbaum said.

Zanchi said she will look into the problem.

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.