Experts: Sustainable, Effective DD Systems Support Individuals; Don't Pigeonhole People In Groups

Mary Lee Fay and William Ashe * All Photos By Anne Peters

By Gina Macris

When it comes to reforming service systems for those with developmental disabilities, policy makers often succumb to a fundamentally flawed approach, one expert told a Rhode Island Senate study commission Jan. 8.

Policy makers tend to “think about people in groups, but not think about people as people,” said William Ashe at a meeting of the commission, looking into how Rhode Island supports private service providers.

Ashe has helped the state of Vermont evolve toward a system that puts the needs of the individual first.

He also has become familiar with Rhode Island as a consultant to the federal court monitor overseeing implementation of a 2014 consent decree requiring the state to transform its segregated service model to a system that is integrated with the community.

Asked his opinion of Rhode Island system, Ashe said that what he’s seen leads him to believe it is a “barrier” to people’s ability to live more “independent and connected lives.” Ashe said his opinion is his own, not that of the monitor.

His comment,, however, happened to coincide with findings of the U.S. Department of Justice in 2014, which said Rhode Island’s funding rules incentivized segregation.

Ashe is executive director of Upper Valley Services, which serves a single county in Vermont that is about half the size of Rhode Island. He addressed the commission along with Mary Lee Fay, executive director of the National Association of State Directors of Developmental Disabilities Services (NASDDDS).

Fay presented a broad swath of statistics on nationwide trends, but she nevertheless arrived at basically the same place as Ashe, talking about building services around relationships between persons with disabilities, their families and other important people in their lives.

How To Apply Best Practices To Rhode Island?

The session raised questions about how members of the commission will process the information in coming weeks and apply it to Rhode Island.

For private providers, Rhode Island has a fee-for-service system authorizing payments to providers only three months at a time, for a fixed menu of supports, requiring documentation of each worker’s daytime interaction with each client in 15-minute increments.

There is also a parallel state-run system of group homes that is exempt from the rules applied to private providers, even though they are all paid through the federal-state Medicaid program.

With all its emphasis on making private providers accountable for each minute of service, Rhode Island’s funding model has no definition or measure of what the services are supposed to accomplish in terms of stabilizing or improving people’s lives.

Successful outcomes were a recurring theme among the best practices described by Ashe and Fay.

L to R: Commission Members Deb Kney, Kevin McHale, Tina SPears, and Chairman Louis DiPalma

After the meeting, the commission chairman, Sen. Louis DiPalma, D-Middletown, said the speakers offered a lot of “food for thought”. At the same time, he said, he wants to know more about the context of the successes in Vermont.

There, the predominant housing option is shared living in private homes – even for individuals who have challenging behavior - and services are tailored, or “bundled,” for a year’s time into individualized funding authorizations based on a person’s needs and goals.

Vermont’s system has been decades in the making, and DiPalma said he wants to know more about how the state got to where it is today. He said he expects commission members to begin airing their thoughts about the future of Rhode Island’s developmental disability system at the next meeting, yet to be scheduled, in late January.

Demographics, Economics Converge To Squeeze Human Services

Fay said that all the states are facing the same pressures, driven in part by the aging of the large population born after World War II.

Baby boomers have:

• Increased the demand for the same type of direct care workers for the elderly as those who are employed in the field of developmental disabilities

• Driven up the federal Medicaid and Medicare expenses, both entitlement programs with no cap.

Illustrating her point, Fay said that the fastest segment of the population is the elderly aged 85 and older. About 70 percent of that group needs some kind of assistance, she said.

Meanwhile, the expansion of Medicare and Medicaid, combined with last year’s tax cut, will lead to continuing debate in Congress about the future of these safety-net programs, Fay said.

At the same time, demographic projections point to a shortage of direct care workers. The group most likely to go into direct care work – women aged 18 to 55 – remains flat in demographic projections 20 years into the future.

Low wages are an issue with the current workforce, but Fay said the demographics indicate there just will not be enough workers to go around in the future. States “won’t be able to buy” their way out of the labor shortage, which will get much worse in the years to come, she said.

Instead, she said, states will have to “think” their way out of the crisis with a new approach; less reliance on 24-hour care and more supports built around families – and employment.

In Vermont, that approach seems to have paid off more often than not, according to Ashe.

Ashe’s agency is one of ten organizations in Vermont which have broad responsibilities within a designated area for serving adults with developmental disabilities, although there are several other specialized providers without geographic boundaries.

To receive immediate funding, individuals must meet high-priority standards as defined by law. They involve such factors as health and safety considerations or the need for care while both parents work outside the home.

In 2017, there were 238 people statewide on a waiting list for non-priority services, Ashe said.

Ashe’s agency, Upper Valley Services, covers Orange County, an area half the size of Rhode Island with a total population of 28,000, mostly spread out in towns and villages with populations of fewer than 1,500. There is one traffic light in the entire county, Ashe said.

Ashe said all service plans are individually designed and reviewed by a board which includes representatives of providers and consumers as well as state officials. The board’s recommendation is submitted to the state, which makes the final decision on services and funding.

Vermont and RI Differ on Funding Approaches, Wages

Vermont, like most other states, allocates funding on an annual basis. Rhode Island is the only state which funds services quarterly, Fay said.

And unlike Vermont, Rhode Island allocates funding first and expects providers to come up with an individual service plan that doesn’t exceed the budget.

Ashe credits the Vermont legislature for making a practice of anticipating an increasing caseload and funding to meet its needs, rather than forcing providers to dilute the supports for people they already serve to cover the new arrivals.

In 2017, Ashe said, 390 people benefited from the legislature’s new-caseload funding practice, he said.

Vermont’s designation of responsible agencies means they cannot reject anyone in their geographic area who meets the eligibility criteria for priority funding. As a one-stop shop for everyone, Ashe’s agency provides a broad range of services to about 200 individuals in its jurisdiction.

The starting wage at Upper Valley Services is $14 an hour and the annual turnover is 13 percent, significantly lower than the statewide turnover rate of about 23 to 25 percent. If Ashe must serve a particularly challenging client, he said, he has the authority to increase a worker’s hourly rate. Instead of $14, he said, he might pay $18.

Rhode Island providers pay an average entry wage of $11.36 an hour, according to a trade association, although some workers new on the job make minimum wage, which is $10.50 an hour. Job turnover in Rhode Island averages about 33 percent each year, although the rate varies among individual providers.

Nationwide, the average state-level rate of turnover is 46 percent, according to Fay.

In Vermont, the average cost of services per person is $60,037, Ashe said, slightly higher than in Rhode Island.

In a statewide population of just over 600,000, Vermont supports about 4,500 people with intellectual or developmental disabilities, about the same number as in Rhode Island, with a population of slightly more than one million.

Individuals have control over their service plans and may move money from one category to another, manage part or all of their services themselves, or let the agency be the service manager.

Employment And Housing

Among the clients of Upper Valley Services, 48 percent have jobs, averaging 8 hours a week, Ashe said.

Nationwide, the employment rate for adults with developmental disabilities is 19 percent, according to Ashe and Fay. Rhode Island’s rate is above the national average, but an exact figure was not immediately available.

Fay emphasized that employment is important not only for income, but also because a job provides autonomy and leads to connections with other people.

Shared living is one of five housing options in Vermont that, taken together, offer a broad range of supervision, up to and including intermediate care with a maximum of six residents in one facility.

The annual stipend for shared living is about $32,500. Ashe said he expects one responsible adult in the family to stay at home and not take an outside job.

Shared living should be viewed as part of a relationship, Fay said, not “foster care” or a “placement” that has nothing to do with the participants’ connections to each other.

24-Hour Case Management Key To Success

Ashe said the core of his operations is a network of case managers, each one with a caseload of about 14 people, who are on call 24 hours a day.

Case managers may arrange respite care for shared living providers or provide additional in-home supports, among a broad range of activities that include diffusing a crisis experienced by someone on their caseload.

In most instances, Ashe said, “the problem is not the person but the services around that person.”

His agency focuses on “re-building the support system to help that person stay in the community,” Ashe said.

In Vermont in 2017, there were five psychiatric admissions among adults with developmental disabilities, according to figures provided by Ashe.

Responding to a question from Rebecca Boss, Director of the Rhode Island Department of Behavioral Health Care, Developmental Disabilities and Hospitals, Ashe described the history of a crisis team begun in 1991 and crisis training for direct care staff in the field that has helped keep the number of psychiatric hospitalizations low.

Lending a national perspective, Fay said states are learning not to bring families to the table and expect them to speak a bureaucratic language to ask for a specific program, but instead to discuss ‘what is happening in your life and how can we support you?’’

Sometimes, families accept more services than they need, because they fear they will not be able to get them in the future, Fay said.

“I have visited states where people say, ‘I’ve taken a service not because I need it, but because if I say no, I’m afraid I won’t get access to anything in the future,’ “ Fay said.

States have to build trust in families, she said. Systems have to be designed to create an underlying confidence among families that the support will be there as the family’s needs change, she said.

Fay said “there isn’t a system out there that has it down perfectly,” but “states that do it well succeed because they have partnerships” with their communities.

To see an outline of Fay’s full presentation, click here.

To view a video of the commission meeting, click here. Look for an icon labeled with the date 1-8-19 and a title that reads “Special Legislative Study Commission To Evaluate Project Sustainability.” Note that some browsers may need Flash to play the video.

RI Senate DD Commission To Hear Options For Changing Funding Model From Two Experts

By Gina Macris

Two experts with broad experience in developmental disabilities will provide their perspectives on best practices Tuesday, Jan. 8 at the next meeting of the Rhode Island Senate commission studying “Project Sustainability,” the state’s much-criticized fee-for-service reimbursement system for private service providers.

Mary Lee Fay is executive director of the National Association of State Directors of Developmental Disabilities Services (NASDDDS), based in Alexandria, VA.

William Ashe helped develop Vermont’s current “bundled” payment system. So-called “bundled” payments cover a defined set of services for a specific period of time. The system allows for individualized funding around each person’s unique needs, according to a description of the program Ashe wrote for the Vermont legislature in 2016. He is also involved in current efforts to update the Vermont payment system.

Ashe has experience in state government in Massachusetts and as a longtime private provider of developmental disability services in Vermont.

He has collaborated with the independent federal court monitor who is overseeing Rhode Island’s compliance with a 2014 federal consent decree intended to desegregate the state’s developmental disability service. Ashe has accompanied the monitor, Charles Moseley, on site visits and has written reports that have been incorporated into Moseley’s recommendations to the U.S. District Court.

Fay worked for much of her career for the state of Oregon, becoming director of developmental disabilities, a post she held for 11 years before she moved to NASDDDS in 2012. She is credited with leading the way for Oregon to become a leader in high quality services that allow adults with developmental disabilities more control over their lives.

For her first three years at NASDDDS, Fay focused on working with states to engage adults with developmental disabilities with their communities. She was named executive director in 2015.

Both Ashe and Fay were recommended to the commission by Moseley, the monitor in the consent decree case.

According to a spokeswoman for the commission chairman, Sen. Louis DiPalma, D-Middletown, Moseley said both speakers:

• are familiar with the way different states manage services

• are familiar with DD funding policies, practices, and requirements under Medicaid;

• understand rates, rate setting, and provider billing processes;

• understand the impact that funding has on the ability of individuals to live and experience full, productive, and integrated lives; and

• understand approaches other states are using and lessons learned by their successes and challenges.

The Jan. 8 Commission meeting will be held from 2 to 4 p.m. in the Senate Lounge at the State House.

RI Consent Decree Judge Wants To Sharpen Focus On DD Services That Encourage Integration

By Gina Macris

For nearly three years, the U.S. District Court in Rhode Island has monitored the state’s progress in implementing a federal civil rights consent decree that seeks to integrate adults facing intellectual or developmental challenges with their communities, detailing the progress made and work yet to be done.

With the 2014 consent decree nearing the middle of its 10-year run, and an earlier, more limited companion agreement designed to expire in July, 2020, Judge John J. McConnell, Jr. has asked participants to come to court next time with a different approach.

In a hearing Oct.30, McConnell asked an independent court monitor, lawyers for the U.S. Department of Justice and state officials to come to court next time with a focus on the areas of greatest concern and to be prepared with recommendations for what the Court can do other than monitor developments.

On Oct. 30, he boiled down the core issues into two parts.

• Each person protected by the consent decree should have a thoughtful long-range plan for a career that reflects his or her unique needs, preferences and goals.

• Actual services funded by the state should fit with the goals of the individualized career development plan.

To be sure, McConnell praised the “tremendous progress” made by the state, including the closure earlier this year of the last sheltered workshop. He also heard about increases in supported employment, the growth of a quality improvement unit aimed at assuring all services meet high standards, and cooperation among state officials and private providers. Providers have said in recent months that their working relationship with state officials is better than it has been in many years.

At the same time, problems persist in finding jobs for young adults and in providing high quality personalized support services for non-work activities that typically take up the majority of individuals’ time, according to the testimony McConnell heard.

Continuing concerns about inadequate funding surfaced during the Oct. 30 hearing when the independent monitor, Charles Moseley, described a visit he and another consultant had with state officials and 16 providers in early August.

In a report filed with the Court hours before the hearing, Moseley said “significant numbers” of the providers indicated that they continue to run deficits in key areas and that funding allocations for individual services are insufficient to cover the costs of the services that must be provided.

Among major barriers to providing services, 94 percent cited transportation, 88 percent pointed to a lack of funding and complicated billing procedures for reimbursement, and 69 percent highlighted high staff turnover and poor job retention.

All these factors become particularly problematic when the state and the federal government are asking providers to undertake more staff training to gain expertise in the principles and practice of individualization, to enroll more young adults as clients, and to provide individualized support in the community as each of their charges goes to different job sites and engages in non-work activities in various places.

According to the consent decree, all young adults who left high school between 2013 and 2016 – those seeking adult services for the first time - were to be offered employment by July 1, 2016. But the state still hasn’t fulfilled that requirement, even after the deadline was extended to Sept. 30 of this year.

Moseley reported that on Sept. 29, the state had achieved 77 percent of that goal, or 257 job placements out of an “employment census” of 334 young adults.

Victoria Thomas, the DOJ lawyer, said she believes the state is using effective strategies to reach out to the remaining young adults and will monitor the situation.

She said DOJ lawyers visited the Birch Academy at Mount Pleasant High School recently and while they were generally delighted with the transformation, they were surprised to learn “how few high school students exited directly into supported employment.”

Students at the Birch Academy are protected by the predecessor to the 2014 statewide consent decree, called the Interim Settlement Agreement. The agreement, signed in 2013, was limited to addressing the use of the Birch high school program as a feeder to a now-defunct sheltered workshop in North Providence called Training Through Placement.

Thomas said that, according to the Interim Settlement Agreement, students who turn 18 should have the support they need to make the transition to work or actually hold a job while they are still in school.

Thomas said she wants to address the transition issue in the time remaining for the Interim Settlement Agreement, which is to end July 1, 2020.

All parties to the settlement must be in “substantial compliance” with the Interim Settlement Agreement a year before it expires. What substantial compliance looks like might be different for the state than for the Providence School Department, said Thomas, telling the judge that the DOJ will prepare some recommendations on the matter.

The city has met virtually every target set out by the Interim Settlement Agreement and earned McConnell’s praise. “Keep it up,” he said.

The state is responsible to the court for the work done by the private service providers under the terms of both the Interim Settlement Agreement and the statewide consent decree.

The providers’ performance got mixed reviews from Moseley and another consultant, William Ashe, who in early October analyzed a small random sample of plans, looking for the degree to which they were individualized and how they compared to the actual services provided.

The consultants expected the providers to use a guide on “person-centered thinking” developed by the Sherlock Center on Disabilities at Rhode Island College to formulate plans that put a particular person’s needs, preferences, and goals at the center of the planning process.

In 10 of the 17 plans, participants chose non-work activities from a menu of offerings that rotated on a weekly schedule, according to Ashe. But this kind of choice is not considered “person-centered” because the participants were not able to consider the the full range of opportunities available in the community.

“It is fair to say that the implementation of person-centered planning remains a work in progress where there has been significant but uneven advances in the development of person-centered planning practices. There remains a significant amount of work yet to be done,” Ashe wrote.

He found other instances in which plans indicated individuals had significant problems in communication. But neither the plans nor the actual services addressed ways in which communication could be improved.

“Frequently, there were clear instances of personal preference identified in the planning process that did not appear to be reflected in the services that were actually happening, Ashe said.

For example, one man indicated he wanted to learn to read and use a computer, but none of the goals written in his plan responded to that request.

Some of the plans reviewed were for clients of Easter Seals Rhode Island, formerly Community Work Services, an agency that nearly lost its license to operate in 2017 but has made a dramatic turnaround during the last year.

Ashe said “there are still very substantial steps that need to be taken in order to get this organization to an acceptable level of “person-centeredness” and to some extent, the same applies to other agencies.

Agencies should “diversify” the way that integrated day services are provided, he said.

From what Ashe observed, he said, it felt like community agencies like the YMCA and a bowling alley were becoming “a little bit like a day program” as staff and clients from one or more service providers gathered in the same place at the same time.

At the bowling alley, staff from several agencies sat together with their clipboards and watched the bowlers, Ashe said.

Based on a review of documents and direct observations, Ashe said, “there is a significant ongoing need for continued training on person-centered planning with an emphasis on how to take a plan and put it into action.”

“A good person-centered plan by itself does not produce good person-centered outcomes. How to individualize and implement these plans needs to be a focus for training,” Ashe concluded.

Read the full monitor’s report here.

Judge McConnell: Consent Decree Progress Should Not Distract State From Long Road Ahead

By Gina Macris

U.S. District Court Judge John J. McConnell, Jr. says Rhode Island has made considerable progress in laying the groundwork to comply with a three year-old consent decree aimed at improving the lives of adults with developmental disabilities.

But that progress should not distract all concerned from “how far we have to go,” McConnell said.

In a quarterly review of the case on March 10, McConnell called attention to the remarks of the U.S. Department of Justice (DOJ), Nicole Kovite Zeitler, who spoke of the state’s progress and the unrealized potential of the consent decree to transform lives for a generation. 

“From where we were a year ago the work the state has done is commendable,” Zeitler said, “but the ultimate goal of the 2014 agreement is the transformation of services” for adults with developmental disabilities.

“These people have goals, just like anyone else,” Zeitler said.

Yet, a recent review of the day services typically offered adults with disabilities conveys a lack of purpose.  “There’s a feeling that attending a day program is just something people do,” she said.

The DOJ is committed to ultimate compliance with the consent decree, Zeitler said, but the decree means more than financing plans for services.  

Rather, the effort must put individuals’ goals and dreams at the center of the process and incorporate ongoing quality assurance practices to ensure continued compliance with the consent decree, she said.

Zeitler referred to a review of the day services of 21 adults by consultant William H. Ashe that was incorporated into a recent report to the court by the independent monitor in the case, Charles Moseley.

In many cases, Ashe found the signposts of individualized or “person-centered’” planning absent.  The service planning process required by the state  ”feels rigid and automatic,” Ashe noted. ”The ISP (individual service plan) for a person this year may often look remarkably similar to the one that was done last year. The funding that agencies receive is based on assessed ‘functioning level’ and not based upon what people may want or actually need,” Ashe said.

”Agencies are often in a situation where their staffing levels prohibit them from individualizing supports to the extent that is necessary to really implement services that are based upon real choice,” he said.

The monitor, Moseley, has given the state notice in a recent report to the court that he wants changes in the funding and planning process that meet the “person-centered” requirements of the consent decree. The state must give him progress reports quarterly, beginning April 1.

McConnell asked why the percentage of young adults finding employment was so low – only 22 percent. Moseley said the percentage dipped as the state complied with a request he made last fall to fully identify all eligible individuals who have left school since 2013.

The count of the so-called “youth exit” group initially stood at 151 young adults with developmental disabilities. By November the figure had jumped to 501, and, now is 516, Mary Madden, the state’s consent decree coordinator, told the court.  

The number of young adults with jobs is 109, according to the latest reports of the state to the monitor.

Referring to a provision of the consent decree decree which requires “all” young people to have jobs the same year they leave school,  McConnell asked why the employmentbenchmark for young adults is so “aggressive”.

Zeitler said the goals were designed that way because the generation going through school now is learning the skills necessary to prepare for adult life.

These young people have the most to gain from the consent decree and the most to lose without it, Zeitler said. They know their own potential, but under the old system they would spend years in isolation from the larger community, she said.

The 2014 consent decree settled findings of the DOJ that the state relied on sheltered workshops and segregated day programs in violation of Title II of the Americans With Disabilities Act, which was reaffirmed in the Olmstead decision of the U.S. Supreme Court in 1999. The Olmstead decision said that individuals with disabilities have a right to receive services in the least restrictive environment that is therapeutically appropriate, which is presumed to be the community.

The Rhode Island decree is not the first Olmstead enforcement action in the country, but the first one that addresses daytime programs that segregate adults with disabilities. Because they ard the DOJ.

A year ago, the state had made virtually no effort to implement the consent decree and lacked the financing, data, and staff to respond to requests made by the monitor. After an evidentiary hearing in April, McConnell issued a multi-faceted order which put the state on short deadlines for responding to discrete tasks – or face contempt proceedings.

So far, the order has brought results:  $11 million more in federal-state Medicaid funding, a larger staff to work on policy changes, and better cooperation and communication among the agencies responsible for implementing the agreement – the Department of Behavioral Healthcare, Developmental Disabilities, the Office of Rehabilitation Services, and the Rhode Island Department of Education.

One part of McConnell’s order has led to an incentive program for service providers to find jobs for their clients and help them stay employed. That program has placed 20 new hires since January, although Zeitler said the state needs to have “frank discussions” with service providers about continued gaps in job placement targets in two of three segmentsof the population represented by the consent decree.    

Moseley, the monitor, has followed McConnell’s lead in adopting short-term deadlines for specific tasks he has assigned the state. One such inquiry led to the identification in November of young adults with autism or multiple disabilities who hadn’t previously been counted as part of the consent decree population. That’s what boosted the so-called “youth exit” population to more than 500.

More recently, Moseley has enumerated dozens of tasks relating to the individualization of services, better internal quality improvement efforts, methods of funding, employment, and other consent-decree issues, along with short-term deadlines for responses.

Jennifer Wood, General Counsel to the Secretary of Health and Human Services, the head of the state’s response to the consent decree, said Rhode Island now has the bureaucratic “infrastructure” to delve into the actual service delivery system.  “Person-centered planning is at the heart of that,” she said.

The next court review will be scheduled for mid-July, but McConnell said he wants to receive interim progress reports from Moseley.  McConnell also noted that from time to time, he receives letters from parents and makes them part of the case file, which is a public record. 

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