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Proposed changes to DDS behavioral and restraints regs would subtract protections, add vagueness

August 26, 2016 2 comments

The Baker administration is proposing major changes to regulations governing behavior modification techniques and restraints that are used on persons with developmental disabilities.

The Department of Developmental Services claims these changes will enable disabled individuals “to grow and reach their maximum potential,” and will limit or eliminate the use of certain types of controversial restraints, which are used during behavioral emergencies.  We read the proposed changes differently, however.

In our view, the proposed changes would eliminate a large number of specific requirements and restrictions on behavioral techniques and restraints, and replace them in most cases with more vaguely worded provisions that will provide less protection against potential abuse.

For instance, DDS is proposing to scrap the current regulatory definitions of chemical, mechanical, and physical restraints as well as many of the procedures specified in the current regulations regarding those restraints. These procedures would be replaced by a process called the “Crisis Prevention, Response and Restraint curriculum” (CPRR).

It’s not clear in the proposed regulations what the CPRR curriculum is. The proposed language states that the CPRR curriculum uses “Positive Behavior Supports as the framework,” but, as I discuss below, the proposed regulations are equally vague about what the Positive Behavior Supports (PBS) involve.

According to the proposed regulations, the CPRR curriculum will or already does contain a list of “acceptable restraint techniques.”  But the proposed regulations don’t appear to specify what those acceptable techniques are. Nevertheless, the proposed regulations state that there is a list of DDS-qualified CPRR Curriculum providers who will apparently instruct DDS residential and day program providers in CPRR procedures.

As noted, a lot of specific requirements in the current regulations would be deleted in the proposed regulations.  For instance, requirements would be deleted that mechanical and physical restraints be authorized by either the provider agency head, an authorized physician, or a designated staff member who has had training in the safe use of those procedures.

Also deleted is language stating that any mechanical device used as a restraint must must allow for “the physical and emotional comfort of the individual in restraint.”  In addition, the current regulations state that locked mechanical restraint devices requiring the use of a key for their release are prohibited. This statement is deleted as well in the proposed regulations.

It’s possible that all of these requirements are contained in the CPRR curriculum; but we think these requirements should still be spelled out in regulations, which carry the force of law.

The CPRR curriculum, whatever it is, could be changed at any time and would seem to leave it up to the discretion of DDS and the unspecified curriculum providers as to what types of restraints are acceptable and how they should be used. That could make it difficult for families or guardians to challenge the use of restraints on their loved ones if they believe those restraints are being used excessively or abusively.

This does not appear to us to be a good direction for DDS to take given the fact that the use of restraints has become increasingly controversial in recent years.

Regarding the allowable duration of restraints, the proposed regulations would appear at first glance to be an improvement over the current regulations; but even here, the proposed language appears more ambiguous than the current language.

The proposed language states that no individual can be restrained for more than 60 minutes. The current regulations allow for continuous restraints lasting up to 6 hours, and state that non-continuous restraints cannot last more than eight hours in a 24-hour period.  But while the proposed language would appear to be an improvement in that regard, the language does not specify whether the 60-minute time limit applies to use of non-continuous restraints. In other words, the proposed language does not appear to prohibit multiple uses of restraints on an individual in one 24-hour period, with each use lasting 60 minutes.

Also, the proposed regulations would prohibit “chemical restraints,” which involve the use of anti-psychotic medications during behavioral emergencies. But anti-psychotic medications would still be permitted as part of an individual’s behavioral treatment.

NOTE: We do support a proposed change in the regulations that appears to introduce a specific prohibition against physical restraints that causes pressure on the lungs. Specifically prohibited under this section would be restraint in a prone position in which the individual is lying on their stomach.

Proposed changes in behavioral modification regulations

In the same set of regulations, DDS is proposing to scrap the term “behavior modification” and replace it with “positive behavior supports” (PBS). As noted above, these proposed changes raise similar concerns for us in that there seems to be less specificity in the proposed PBS system than in the current requirements, many of which would similarly be deleted.

The proposed regulations don’t even appear to clearly define PBS as much as make vague statements about the proposed system.  The proposed language states, for instance, that:

PBS emphasizes the use of positive behavior approaches and recognizes that behavior is often an individual’s response or reaction to the environment and the need to communicate his or her preferences and wants to others, and, therefore, PBS focuses on environmental modifications and antecedents.

At the same time, the proposed regulations delete all references to “Level I and Level II behavioral interventions,” which are described in detail in the current regulations.  These Level I and II categories appear to be replaced by “Universal and Targeted Supports,” which seem to have much more vague definitions.

The current regulations specify that Level I interventions include such things as positive reinforcement, corrective feedback, and “contingent exercise,” and “time outs” of 15 minutes or less with staff present in the room. The current regulations also state that Level II interventions include procedures that require some “physical enforcement,” and time outs of 15 minutes or less with staff present just outside the room.

In contrast, no actual examples are provided in the proposed regulations of Universal or Targeted supports.  Targeted supports are defined as “practices that are implemented fairly rapidly on an ‘as needed’ basis for an individual or group of individuals at risk for developing problem behavior…”   There is no indication what those practices might be.

The proposed regulations do appear to leave in place current language regarding Level III interventions, which is the most intensive level of behavior modification techniques under the current regulations.  The current regulations state that Level III interventions include such things as contingent skin shock and time outs lasting more than 15 minutes. It is not clear, though, whether there is a relationship in the proposed regulations between Level III interventions and a new category called “Intensive Supports” in the proposed regulations.

In fact, there appears to be no definition or examples of Intensive Supports in the proposed regulations.  The proposed regulations state that Intensive Supports should be used  “when there are concerns that the health, safety, or emotional well-being of the individual, or others, is at risk, or the individual’s quality of life is seriously impeded due to challenging behavior.”

There also appears to be some confusion in the proposed regulations over the permissibility of skin shock and some other Level III interventions.  In one section, the proposed language states that contingent skin shock and seclusion are prohibited practices that “are not be permitted under any circumstances.”

Yet, contingent skin shock is still listed under Level III interventions in the proposed regulations as being acceptable if it is determined that the risks as weighed against the benefits of the procedure would not pose an “unreasonable degree of physical or psychological harm.”

Also, while seclusion would be prohibited under the proposed regulations, the regulations would, as noted above, still permit time outs, which are defined as the placement of an individual alone in a room. Under the Level III intervention requirements, time outs of longer than 15 minutes are permitted if they don’t pose an unreasonable degree of physical or psychological harm.

Other deletions in the proposed changes to the behavioral modification regulations

Also included in the deleted language in this section is a requirement that behavior modification treatment plans are subject to Individual Support Plan (ISP) requirements. ISPs are written plans of supports and services for individuals that are subject to separate regulatory requirements.

The proposed behavioral modification regulations state that a “PBS Plan” would be needed for Targeted and Intensive Supports, but the proposed language does not indicate how such a plan would relate to an individual’s ISP.

Other proposed changes in the this section of the regulations include the apparent replacement of an Advisory Panel for behavior modification interventions with a “Leadership Team” for PBS interventions. At least some of the current requirements regarding qualifications of clinicians on the Advisory Panels appear to be lessened in the proposed language regarding the PBS Leadership Teams.

For instance, membership of the proposed Leadership Teams must include one senior level “qualified clinician.”  A qualified clinician is defined in the proposed regulations as holding a master’s degree in psychology or another “relevant discipline” and having at least 5 years of clinical background in developmental disabilities.

Under the current regulations, the behavioral modification Advisory Panels must have at least five members, “a majority of whom shall possess doctoral level degrees in psychology, with significant training and experience in applied behavior analysis and behavioral treatment” (my emphasis).

Proposed change to privacy rights of persons with developmental disabilities 

Finally, we strongly oppose a proposed change a separate section of the regulations regarding the privacy rights of persons with developmental disabilities.

Current language in this section requires that “assistance (be provided) by same gender staff for hygiene and medication administration when the partial or complete disrobing of the individual is required.”  DDS is proposing to add the phrase “to the extent possible” to this language. We believe this change would have a potentially negative impact on the privacy and dignity of persons in the DDS system, and would increase the potential for abuse of those persons.

In our view, the proposed language would give providers virtually complete discretion to determine whether same-gender privacy protections were possible to provide; and we believe providers would base their decisions regarding the use of same-gender staff on their staffing needs rather than on the privacy and dignity of persons in their care.

We recognize that there may be appropriate and warranted preferences by individuals or their families or guardians for care by staff of a different gender, and we would welcome new language in the existing section of the regulation that would reflect those preferences.

In sum, we think DDS needs to go back to the drawing board with respect to this entire set of regulatory changes. At the very least, the Department should re-insert the specific protections it has deleted regarding restraints and behavioral supports.

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Baker administration concedes some congregate care for the developmentally disabled is good, but will still largely prohibit it

August 4, 2016 Leave a comment

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.