COFAR blog

When Janice Marinella first saw the Wrentham Developmental Center campus a few months ago, she had misgivings about whether it was the right place for her 34-year-old son Jeremy.

The red brick buildings on the sprawling rural campus are old, and some looked run-down. At the same time, though, she felt Wrentham was the last chance for Jeremy. He had been living in her home for the previous five years after his last group home closed unexpectedly.

In each of the three successive group homes in which he had lived, he had been either neglected or injured, Janice said.

Janice had to leave her career of 30 years in dentistry to care for her son at home. At first, it seemed like the right decision. But after five years, she felt she couldn’t continue to keep him at home due to the high level of care required. Yet she couldn’t find another safe or suitable residential placement for him.

“I felt that my own health and age were pressing down on me daily,” she said.

But while the appearance of the buildings on the Wrentham campus made her decision to place her son there a difficult one, she soon came to reassess her initial reaction. She said she realized that what goes on inside the buildings at Wrentham is more important than how they look on the outside.

“I no longer see it (Wrentham) as institutional,” Janice said. “I now see the love and devotion the staff gives my son.” She added that even though the buildings are old, her son’s unit is “immaculate.

The hallways, the bathrooms are spotless,” she added. While many modern nursing homes smell of urine, she said, that isn’t true at Wrentham. “They really work hard to keep it clean.”

For Janice, the decision by the Department of Developmental Services (DDS) to admit Jeremy on September 20 to Wrentham has opened new and positive possibilities for both him and herself. It was a rare new admission to one of the two remaining developmental centers in the state.

“I’m so grateful that we have now found a real home for Jeremy,” Janice said. “My son deserves a home and family that will serve him after I am gone. This is the first time he has been treated with respect and dignity outside my care.”

Janice added that, “I see placing Jeremy here as an act of love for him. I want to love and support him through this transition, which I’ve made by choice and not due to an emergency.”

Welcomed by staff at Wrentham

Janice said placing Jeremy at Wrentham was “the hardest decision I’ve ever made. I had to learn how to trust again.”

She said the staff at Wrentham helped her to do that. “They were extremely welcoming,” she explained, adding that the staff appeared from the start to be trying their best to accommodate Jeremy’s needs.

And in what Janice said was a first for her, a member of the Wrentham staff told her that they saw “potential” in Jeremy. One member of the staff told her he was “honored” to be able to care for him.

“They have taken everything I express into consideration,” she said of the staff.

Facing a food and nutrition challenge

One of the first challenges the staff faced was to get Jeremy to adjust to the food at Wrentham. It has taken work and communication, Janice said, to ensure that Jeremy, who was used to her cooking, would continue to eat.

Jeremy, who weighed only 104 pounds when he arrived at Wrentham, and is 5-foot, three inches tall, needs to eat 3,000 to 4,000 calories a day, or he will lose weight, Janice said. He has a condition known as “failure to thrive,” which makes any weight loss dangerous to his health.

“The nutritionist, the social worker, the nurse – the whole team came down and talked to me,” she said. After two weeks at Wrentham, Jeremy’s weight actually went up, from 104 to 106 pounds.

Janice said when she told the staff that Jeremy does not generally engage in communal activities, but often likes to be by himself, the staff offered to make an unused room across the hall a sitting room available for him alone. He will be able to watch his TV set there.

The staff have been involved from the start, she noted, in making sure Jeremy has fulfilling activities. She said that during his first two weeks at Wrentham, they took him for walks, and took him in a van to an adult education program.

Jeremy also attended a fall festival on the campus, with lunch delivered outside. The staff provided Janice with a photo of Jeremy at the festival, holding a puppy on his lap. He will also attend the Center’s upcoming Halloween party.

“We are so excited to begin his swim program in the pool,” she added.

After a month of visiting Jeremy in his new home, Janice said she wants to work “to open the door to Wrentham to other parents.” Jeremy is apparently one of the first new placements at Wrentham in years. “I want to show others that this can work.”

“It’s such a blessing that they see potential in him,” she said.

Almost zero new placements at Wrentham in recent years

Developmental centers, also referred to as Intermediate Care Facilities for individuals with intellectual disabilities (ICF/IIDs), must meet more stringent federal requirements for care and conditions than do other residential facilities, such as group homes, in the DDS Home and Community Based Services (HCBS) system.

That has created a perception among policy makers that ICFs/IID are more expensive to operate than are group homes. However, it is not necessarily an accurate perception.

For the past several decades, ICFs/IID such as Wrentham and the Hogan Regional Center in Massachusetts have bucked a nationwide, ideological trend toward the closure of  congregate care facilities. Starting in 2008, the administration of then Governor Deval Patrick closed four of the six remaining developmental centers in Massachusetts.

Since Fiscal Year 2012, as the ICFs/IID have been closed, the developmental center line item in the Massachusetts budget has shrunk by $78 million, or 42%, while the privatized group home line item has risen by $563 million, to over $1.4 billion.

That increase in the corporate provider line item appears to belie the promise that closing the developmental centers would save state taxpayers tens of millions of dollars in caring for persons  with developmental disabilities.

As we reported last year, the Baker administration has largely declined to offer the Wrentham or Hogan Centers as options for people seeking residential placements in the DDS system in Massachusetts.

From 2018 to 2020, DDS documents state, the residential population or census at the Wrentham Center declined from 248 to 205, while admissions to the Center declined from only two in 2019, to zero in 2020.

The Patrick and Baker administrations and other opponents of ICFs/IID have also argued that the centers segregate clients from the wider community. But we have long maintained that that claim lacks evidence to support it.

The Wrentham Center, in fact, feels like a community, according to many family members and guardians of the residents there. The campus provides an array of centrally located services that cannot be found in any community-based group home in the commonwealth. Even so, Janice maintains the Wrentham Center doesn’t have an institutional feel to it. The campus has a mix of larger residential buildings and smaller, multi-bedroom homes.

Janice said that when she took Jeremy out for a walk on the campus on Tuesday (October 11), “I cannot even tell you how many folks said hello to us, slowed down and waved while passing, smiling, so happy to see us. I am overwhelmed by it. Every time I have gone to Jeremy’s unit, multiple people have come to say hello and discuss how Jeremy is doing and to express their happiness that he is in their care.”

Community-based system did not work for Jeremy

Prior to moving back home with Janice in 2017, Jeremy had lived in two provider–operated and then one state-operated group home. Janice said he was neglected and suffered serious injuries in those residences in a number of instances.

After Jeremy’s state-operated home in Dartmouth was suddenly closed in 2017, Janice decided he needed to live at home with her. She agreed at that time to voluntarily transfer her guardianship of her son to her ex-husband, Ed, so that she could be paid as her son’s caregiver. She said Ed was supportive of her efforts to care for Jeremy and, in the past year, to find a new placement for him.

But the search for a new placement was frustrating. Janice said she was continually told by DDS that there were no residential settings available in the Department’s New Bedford district, where she lives.

She said that after she contacted COFAR in March of this year, Colleen Lutkevich, COFAR’s former executive director, worked with DDS officials to arrange a tour of the Wrentham Center for her and Jeremy, and to gain approval for Jeremy’s admission there. Colleen’s sister Jean has lived at Wrentham for more than 60 years.

Wrentham needs to become a choice

Janice believes the Wrentham Center could and should become a residential option for more people with disabilities. She said she would be happy to talk with other family members or guardians about the facility.

“My son was warehoused in group homes,” she said. “At Wrentham, it’s about the staff and the opportunities. This is where he (Jeremy) was meant to be.”

The history of state-run institutions in Massachusetts for persons with intellectual and developmental disabilities is critically important for us to know.

That’s why we support legislation in concept that would establish a commission (S.1257and H. 2090) to study the controversial and often dark history of the state schools.

At the same time, we are pushing for changes in that legislation to ensure that the commission recognizes the significant upgrades in care and services that occurred in those facilities in the 1980s. Those changes were primarily due to Ricci v. Okin, a landmark federal consent decree case overseen by the late U.S. District Court Judge Joseph L. Tauro.

In that regard, the proposed commission needs to recognize that the Wrentham Developmental Center (WDC) and the Hogan Regional Center in Danvers — the state’s two remaining developmental centers or Intermediate Care Facilities (ICFs) — provide state-of-the-art care and services today. We don’t want to see the commission used as a political cudgel to attack ICF-level care in Massachusetts.

The ICFs of today are not the same institutions that were subject to the Ricci v. Okin litigation, which had sought to correct horrendous warehouse-like conditions in them. Nevertheless, ICFs have remained political lightning rods for advocates of deinstitutionalization and privatization of remaining care and services for the developmentally disabled.

For that reason, we want to make sure that the proposed membership of the commission and its written charge will not lead to a preordained conclusion that leaves out the history of these facilities after Judge Tauro’s intervention. To help ensure a balanced review by the commission, we are seeking additional seats on the panel for family members and guardians of current residents of WDC and Hogan.

Statements made by some key supporters of the commission have presented the former Fernald Developmental Center and other state-run congregate care facilities in a negative light. It also appears that the makeup of the commission, as currently described in the legislation, would primarily consist of opponents of ICFs and supporters of further privatization of DDS services.

COFAR has contacted Senator Michael Barrett and Representative Sean Garballey, the prinicipal sponsors of the legislation, to express our concerns.

We do support efforts, as described in the bill, to study the past history of institutional care in Massachusetts, and we agree with the premise of the legislation that records on these facilities are scattered and should be organized. We also strongly support efforts to identify persons buried in unmarked graves on the grounds of some of the former facilities.

As noted, however, a complete history of the state facilities in Massachusetts should include Judge Tauro’s assessment of the developmental centers in 1993, as he disengaged from the Ricci case. He noted that improvements made to the facilities as well as community placements had “taken people with mental retardation from the snake pit, human warehouse environment of two decades ago, to the point where Massachusetts now has a system of care and habilitation that is probably second to none anywhere in the world.”

Alex Green, a key proponent of the commission, recently told Colleen M. Lutkevich, COFAR’s executive director, that he is sensitive to our concerns and will advocate for changes to the makeup of the panel.

The bill currently specifies that representatives of the Arc of Massachusetts, the Disability Law Center, Mass. Advocates Standing Strong, Mass. Advocates Organizing for Change, and the Center for Independent Living would be appointed to the commission. All of those organizations are on record as supporting the closure of ICFs in the state.

The bill also states that additional “community members” and former members of state institutions would be given seats on the commission. But the measure doesn’t recommend seats for current residents of either WDC or Hogan, or their family members or guardians.

We think the perspective of those current residents and their families and guardians is needed to provide a full understanding of how the ICFs function today.

In a written statement provided to COFAR, Green said he is seeking to amend the legislation to add two seats for “facility families–whose experiences deserve representation.” He said he will also seek to add a third seat “for another participant with an intellectual disability, ensuring that the composition of the commission adheres to the intent of being a majority of people with disabilities.”

Green added that, “Many of these families and individuals were part of the civil rights movement that led to the (Ricci v. Okin) consent decree, and also ensured that its implementation resulted in an unprecedented overhaul of, and investment in, these facilities.”

We support adding those seats, but would note that even with three seats on the commission, it would appear that pro-ICF members would be vastly outnumbered by proponents of privatized care.

Green said there were 27 groups “and hundreds of citizens signed on in support of the passage of these bills (the House and Senate versions of the legislation), along with co-sponsorship from 10% of the Legislature. Collectively, these individuals and groups represent hundreds of thousands of disabled people across the Commonwealth.”

Green added that, “COFAR’s support means that important amendments will be made to the bills, helping to ensure that a full, expansive, accurate understanding the consent decree era is included.”

Commission’s written charge needs to be expanded to recognize ICFs today

In addition to specifying that there would be current facility family members on the commission, the language in the legislation needs to be changed to specify that the commission will assess the quality of life of current residents of the Wrentham and Hogan Centers. The legislation, as currently worded, only refers to assessing the quality of life of “former residents (of state institutions) now living in the community.”

The quality of life of both current and former facility residents needs to be assessed in order to present a balanced view of Wrentham and Hogan today. Similarly, the bill language currently only requires that the commission “collect testimonials” from former institutional residents. It does not contain the same requirements regarding current residents. Again, those assessments and testimonials from current residents are needed for that full understanding.

“If we don’t talk about the success story that is Wrentham and Hogan today, it’s not telling the whole story,” Lutkevich said. 

It’s important that we get the history of the state facilities right. That’s because we think that in many ways, the warehouse conditions of the institutional system prior to the 1980s are continuing today in many community-based, privatized settings. We hope that sometime in the not-too-distant future, a commission will be established to study that situation.

Unfortunately, the entire Massachusetts congressional delegation has signed onto a newly filed bill in Washington, which, as currently written, would encourage further unchecked privatization of human services, diminished oversight, and reduced standards of care across the country.

In Massachusetts, the bill, known as the federal Disability Integration Act of 2019 (HR.555 and S.117), would threaten the Wrentham Developmental and Hogan Regional centers, the state’s only two remaining residential facilities for the developmentally disabled that meet federal Intermediate Care Facility (ICF) standards.

Moreover, we think the bill does not comply with the law under the 1999 U.S. Supreme Court decision in Olmstead v. L.C., which recognized the value and legitimacy of institutional or congregate care for those who want and need it.

HR.555 (and the Senate version, S.117) calls explicitly for the the “transition of individuals with all types of disabilities at all ages out of institutions and into the most integrated setting…” (emphasis added).  The legislation specifies that the federal government would provide funding for technical assistance to states “to prevent or eliminate institutionalization” of persons with developmental disabilities.

This language does not comport with Olmstead, which held that that the Americans with Disabilities Act (ADA) does not condone or require removing individuals from institutional settings when they are unable to benefit from a community-based setting. In addition, the ADA does not require the imposition of community-based treatment on patients who do not desire it.

At the very least, the language in this bill should be changed to respect the choice of individuals, families, and guardians, either to apply to get into, or to remain in congregate-level care facilities.

So far, we have made our concerns known to the office of Senator Elizabeth Warren, and have requested that Warren reconsider her co-sponsorship of the bill. A staff member said the office will look into our concerns and will convey them to the office of Senate Minority Leader Charles Schumer, the lead sponsor of the bill.

We plan to contact the office of Senator Edward Markey and other members of the Massachusetts delegation as well.

Failure to acknowledge problems with deinstitutionalization

HR.555 perpetuates the myth of institutions as providing “segregated” care. It fails to acknowledge the relentless pursuit of deinstitutionalization in recent decades, which has caused “human harm, including death and financial and emotional hardship.”

What the bill particularly fails to take into account are the major upgrades in care and standards in congregate-care facilities since the 1970s, largely as a result of federal lawsuits brought in Massachusetts and other states.

The irony is that while those lawsuits also led to the introduction and growth of privatized, community-based care throughout the country, poor oversight and low pay and training of staff in the privatized group-home system has recreated many of the warehouse-like characteristics of large institutions prior to the 1980s.

The bill falsely purports to encourage choice

HR.555 states that its purpose is “to clarify that every individual who is eligible for long-term (human) services and supports has a federally protected right to be meaningfully integrated into that individual’s community…” in order to receive those services and supports.

But the bill states that a group home or other facility can only be considered community-based if it has four or fewer unrelated residents. That is an unworkable and actually choice-limiting proposition that is almost as radical as the position of the National Council on Disability that an institution is a facility with four or more people who did not choose to live together.

So, while the bill purports to be in favor of choice, the only choice it recognizes as valid is a community-based setting; and that means a residential setting with four or fewer residents.

But the Supreme Court held in Olmstead that congregate care is appropriate for some persons with developmental disabilities. In Massachusetts, we have repeatedly heard from families and guardians who are satisfied with the high level of care delivered in the Wrentham and Hogan centers.

The people remaining at Wrentham and Hogan are more profoundly disabled and have more serious medical issues on average than in other DDS settings. These people need the intensive care that is regulated by ICF-level standards. HR.555 does not recognize the distinctions or the different levels of care needed by different individuals.

In fact, the real purpose of the bill, in our view, is to eliminate the choice of ICF-level care, which is based on strict federal standards for staffing, in particular.

The political impetus to close all remaining congregate care settings comes, as it has for years, from state-funded, corporate human services providers, who have a conflict of interest because they stand to gain additional state contracts as state-run facilities are closed and their functions are privatized.

Massachusetts, as do most states, allows the providers to operate under a waiver of the ICF regulations, which permits lower standards of care for community-based services. Even so, the cost of that care is oustripping the ability of states to pay for it.

The cost is not identified

HR.555 would require states to offer community-based services immediately to all persons needing such services, and those jurisdictions would not be allowed to impose cost caps or use waiting lists. The bill, however, does not identify what the cost of such a requirement would be or where the funding would come from.

The VOR, which advocates nationally for persons with developmental disabilities, calls the bill “clearly unaffordable.” Simply encouraging, funding, or requiring the transfers of more people out of institutions into community-based care will only exacerbate problems in the latter system.

To the extent that the bill recognizes the cost of care, it attempts wrongly to place the blame on institutions. It refers to “billions of dollars in unnecessary spending related to perpetuating dependency and unnecessary confinement.”

This statement, however, does not recognize the high cost of executive salaries and of mismanagement in the community-based system. In Massachusetts, the cost of institutional care is less than 10% of the cost of privatized, community-based care.

The bill, however, does appear at least to recognize that there are costs in providing community-based care because the bill would require states and providers to review their funding sources and analyze “how those funding sources could be organized into a fair, coherent system that affords individuals reasonable and timely access to community-based long-term services and supports.”

Such a review sounds reasonable, and we think it should be done before legislation is enacted that would encourage further deinstitutionalization. As noted, the deinstitutionalization required by this bill would place a significant financial strain on the community-based care system for which no additional funding has been identified.

We would suggest that people contact the members of the Massachusetts congressional delegation, whose contact information can be found at this site: https://lwvma.org/your-government/federal/.

We hope all of the members of the delegation will reconsider their support of HR.555 and S.117.

The major lobbying organizations for corporate providers to the Department of Developmental Services appear to be pushing the Baker administration and the Legislature to privatize more and more state-run care.

And the administration and Legislature have so far appeared to be more than willing to accommodate the providers.

Governor Baker’s Fiscal Year 2018 budget, which he submitted to the Legislature last month, further widens a spending gap between privatized and state-run programs within the Department of Developmental Services. In doing so, it appears largely to satisfy budget requests from both the Arc of Massachusetts and the Association of Developmental Disabilities Providers (ADDP).

In fact, the increase proposed by the governor in funding for privatized group homes is $26 million more than the $20.7 million increase the Arc had sought. The ADDP may be a little disappointed only because that organization had asked for a $176 million increase in that account!

The chart below shows the widening gap in funding for key privatized and state-run DDS services over the past several years, adjusted for inflation. Under this trend, funding for corporate-run, residential group homes, in particular, has risen steeply while funding for state-operated group homes and developmental centers continues to be stagnant or cut.

 

For Fiscal 2018, the Arc requested a $20.7 million increase in funding for privatized group homes (line item 5920-2000), and the governor obliged with an even higher $59.9 million, or 5.4 percent, increase, as noted.*  The ADDP, as noted, wanted a $176 million increase in that line item.

In the privatized community day line item (5920-2025, not shown on the chart), both the Arc and ADDP asked for a $40.2 million increase, and the governor responded with a proposed $13.6 million increase.

At the same time, both the Arc budget request for Fiscal 2018 and the  ADDP request effectively asked for zero increases in funding for the state-run DDS accounts. Those include accounts funding state-operated group homes, developmental centers, and departmental service coordinators. (The column labeled “Request” in the linked Arc budget document is left blank for those state-run program line items. The ADDP budget request simply doesn’t include those line items.)

The governor appears to have more than obliged the provider organizations regarding those state-run accounts as well. His Fiscal 2018 budget proposes a $1.8 million cut in the state-operated group home account (5920-2010). This amounts to a $6.9 million cut when adjusted for inflation.

In addition, the governor is proposing a  $2.4 million, or 2.2%, cut in the state-run developmental centers line item. (5930-1000). That’s a $4.9 million cut when adjusted for inflation.

And the governor is proposing a cut of $96,000 in the DDS administration account (5911-1003). That is a $1.7 million cut when adjusted for inflation, and means a likely cut in funding for critically important DDS service coordinators, whose salaries are funded under the administrative account.

It’s well known that the Arc and the ADDP oppose developmental centers because those two organizations oppose congregate care for the developmentally disabled and support only care in group homes or smaller settings. What may not be as well known is that the Arc and ADDP appear to have no interest in more funding for service coordinators or state-run group homes, in particular.

Late last month, Baker submitted his proposed Fiscal 2018 budget to the Legislature’s House Ways and Means Committee. In a letter to Representative Brian Dempsey, the chair of the budget panel, COFAR requested that, at the very least, the committee approve a plan to redirect some of the governor’s proposed increase in the corporate residential account to the state-operated group home, facilities, and service coordinator accounts.

(We would note that we have been urging this kind of redirection of funding for the past two years, and neither the governor’s office nor the Legislature are listening.)

Service coordinators

Service coordinators are DDS employees who help ensure that clients throughout the DDS system receive the services to which they are entitled under their care plans. In recent years, funding for service coordinator salaries has failed to keep up with their growing caseloads.

A reason for the Arc’s apparent disinterest in service coordinators may be that the organization has long promoted privatized “support brokers,” in which the Arc is financially invested.

The job descriptions of the Arc support brokers and the DDS service coordinators appear to be quite similar. The Arc notes on its website that “consumers or families hire a support broker to help them find appropriate services and supports to thrive in their community.”

The job description of DDS service coordinators states that they are responsible for  “arranging and organizing DDS-funded and generic support services in response to individual’s needs.”

COFAR Executive Director Colleen M. Lutkevich terms the DDS service coordinators “the eyes and ears that make sure that the providers who report to DDS are doing their best for the residents in a large, confusing system. Without them, the provider agencies have total control, and families do not even have a phone number or a name to call outside the provider they are dealing with.”

Underfunding of state-operated group homes

In addition to provider-run group homes, DDS maintains a network of state-run group homes that are staffed by departmental employees. State workers receive better training on average than do workers in corporate provider-run residences, and have lower turnover and higher pay and benefits.

State-operated group homes provide a critically important alternative to the largely privatized residential care system that DDS oversees. But we have found that DDS routinely fails to offer state-operated homes as an option for people waiting for residential care, and instead directs those people only to openings in the privatized residences.

To be clear, we do not object to a highlight of Governor Baker’s budget — his proposed $16.7 million increase in the  DDS Turning 22 account, which would amount to a 222% increase in that account over the current year appropriation.  Turning 22 funds services for a growing number of developmentally disabled persons who leave special education programs at the age of 22 and become eligible for adult services from DDS. This account has been historically underfunded.

But our concern is that as they enter the DDS system, those 22-year-olds will be placed almost exclusively in privatized programs. An important choice is being taken away from them and their families.

As we noted in our letter to the House Ways and Means chair, the pattern of privatization in Massachusetts state government has become almost permanently established even though the benefits of privatization are highly debatable.  Many questions have been raised about the privatization of prisons  and the privatization of education in Massachusetts and elsewhere around the country.

The privatization of human services may be the biggest prize of all for government-funded contractors.  We need to preserve what’s left of state-run services.

(*The $59.9 million figure for the governor’s proposed increase in the corporate provider line item is based on numbers provided by the nonpartisan Massachusetts Budget and Policy Center. The Arc’s budget document claims the governor’s requested increase was $46.7 million.)

In responses to comments made to a federally required plan for community-based care of the developmentally disabled, the Baker administration is conceding that not all congregate care is bad or should be banned.

Yet, the administration’s draft Statewide Transition Plan (STP) still appears to prohibit or restrict most new group homes from housing more than five residents; and it would apparently restrict funding for most other congregate settings, such as farm-based residential programs.  The administration is currently asking for further comments on the draft STP.

The STP is a requirement of the federal Centers for Medicare and Medicaid Services (CMS), which issued a new regulation in 2014 governing community-based care receiving Medicaid funding. The CMS regulation is intended to reduce reliance on congregate care, but Massachusetts originally appeared to go even further than the CMS regulation in banning congregate care almost entirely.

Along with hundreds of people and other organizations, COFAR submitted comments in late 2014 to the original draft of the STP.  It appears that like us, most of the commenters to that original plan were concerned that the state was going too far in banning virtually all possible forms of congregate care.

As we noted in our comments to the administration in 2014, the Department of Developmental Services appeared to be proposing a ban on new and potentially existing residential settings such as farmsteads, residential schools or settings that are part of residential schools, settings “that congregate a large number of people with disabilities for significant shared programming and staff,” and even new group homes with more than five residents.   Not even CMS was advocating a complete ban on all of those residential options.

Now, after having received those critical comments, the state seems to be willing to continue to fund some forms of congregate care.

In its response to the comments, the Baker administration made the following statement:

The state acknowledges that CMS… has indicated that ‘it is not the intent of this rule (CMS’s 2014 regulation) to prohibit congregate settings from being considered home and community-based settings.’ The …characteristics of any setting (location, geography, physical characteristic and size) are not necessarily determinative of whether a provider can achieve compliance… (my emphasis).

Despite that apparent concession, the Baker administration’s STP states that DDS has determined that 14 corporate providers operating 57 group home sites are not complying with the new CMS regulation.  This lack of compliance is because these residences apparently have “institutional qualities,” either because they house more than five residents or not enough services are provided by community-based providers.

The STP also states that some of these homes may have provided insufficient staff training in “person-centered planning.”  (We have voiced concerns that while person-centered planning is touted as giving developmentally disabled individuals more control over the services they receive and how they pay for them, the process appears to put control over an individual’s funds into the hands of private companies.)

By the way, the administration stated in its responses to the STP comments that the state’s Building Code limits group home capacity to five residents.  Our reading of the applicable Building Code regulation, however, is that it does not set a 5-person limit on all group homes, but rather specifies only that DDS group homes with five residents or less must be classified as single-family or two-family homes (see amendments to 780 CMR. 310.2).

These are, moreover, group homes, and not developmental centers, that DDS has identified as being too institutional.  This raises a concern for us that the federal government and the state are pushing for ever smaller and more dispersed residential settings — a process that diverts more and more taxpayer money appropriated for the developmentally disabled into a grossly unregulated corporate-run service system.

While it appears under the STP as though DDS will allow these 14 providers some leeway in complying with the provisions in the plan, the providers will have to make a range of changes, including potentially relocating their residents to smaller residences.  The STP indicated that this may result in an unspecified additional cost to the state.

The STP also noted that the Association of Developmental Disabilities Providers (ADDP), an influential lobbying organization for state-funded DDS providers, will be in charge of providing assistance to the providers in complying with the plan.

Anti-eviction agreements

One piece of potential good news is that the administration’s STP states that DDS will require providers to sign contractual agreements with residents of group homes that prevents arbitrary and capricious evictions.  This is apparently another CMS requirement.  This could address one of the key problems we’ve identified with provider-operated group homes, which is that they can currently evict residents with minimal notice, particularly in cases in which guardians or other advocates are seen as being pushy or meddlesome.

A portion of the STP also deals with non-residential care.  What stood out was that DDS found that 170 community-based day programs operated by 98 providers did not meet CMS standards due to inadequate daily activities, staffing, and funding.

Administration still steeped in community-first ideology

Despite the apparent softening of its anti-congregate-care position, the administration’s STP still appears to be ideologically opposed to anything not considered sufficiently community-integrated, and therefore too institutional. In its response to some of the comments to the STP, the administration stated that it is its belief that:

…all individuals, regardless of their level of impairment, can benefit from integration and access to the community. (my emphasis)

The administration made this statement after noting that it recognized that “…individuals with significant disabilities live in some settings that presumptively do not satisfy the (CMS) community regulation.”  The administration stated that it is not its intent “to force individuals to move from settings or to take away needed services and supports.”  But that is exactly what DDS did when it closed or downsized four developmental centers in Massachusetts, starting in 2008.

So, in effect, while the administration says in the STP that it recognizes that some individuals live in non-community-based settings, it still maintains that all developmentally disabled individuals, regardless of their level of disability, could benefit from being moved to the community system.  It is a community system, however, in which at least some of the services and supports available in “institutional” settings would most probably be taken away.

On the one hand, the administration acknowledges that it is not the size of a care setting that determines whether it is institutional or not, but rather the services provided and the commitment of the staff.  Yet the administration consistently overlooks the fact that just because a care setting is small, that doesn’t guarantee it will be integrated into the community.

In a perceptive post, Jill Escher, president of The Autism Society San Francisco Bay Area, notes that the real purpose of the new CMS regulation is not to eliminate institutional care, but rather “to put the brakes on the creation of new residences and programs that cater specifically to adults with autism and other intellectual and developmental disabilities.”

In other words, programs for the developmentally disabled cost money, and the CMS is looking to save money by simply eliminating those services.

Here’s Escher’s very apt description of the impact of the CMS regulation and the transition plans of states like Massachusetts:

Though the (CMS) rules talk of “person-centered” and “outcome-oriented” services, where individuals are not “isolated” and are free from coercion and restraint, in Orwellian doublespeak fashion, civil rights and liberation is not the true endgame here. The overwhelming goal is to restrict out-of-home options.

In practice the rules mean if you’re sitting at your parents’ home doing nothing, or in your own apartment without on-site staff, that’s “community integration.” Meanwhile if you prefer a well staffed adult autism program or housing complex, where you are cared for and safe, engaged in the community, and in the company of your friends who may have similar disabilities, your choice is ironically deemed “isolating” by bureaucrats. And therefore subject to the CMS axe.

Jill Barker, who writes The DD News Blog, adds:

Congregate care, providing services to people with disabilities in group settings, is one of many practical solutions to the need for long-term care. It allows for the sharing of resources and lessening of feelings of isolation. It should not be ruled out as an option, although that appears to be the intent of many advocacy organizations.

In my opinion, there is also a quiet war on families who are offered no other alternative but to keep their adult child with DD at home with services that may not be adequate to provide the family with the relief they need and a good quality of life for their disabled family member for the long term.