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When Big Brother (thinks he) knows best about the developmentally disabled

October 29, 2014 4 comments

It can be frustrating when government administrators take it upon themselves to tell citizens what is in their best interest, and that includes telling them what is in the best interest of their family members with developmental disabilities.

It’s particularly frustrating when the state and federal governments tell people that they know best where their family members should or should not live.

For instance, the folks at the federal Centers for Medicare and Medicaid Services (CMS) have determined that farm-based residential programs are not good for developmentally disabled people. Also bad are residential schools for the developmentally disabled, group homes on the grounds of a private developmental or Intermediate Care Facility (ICF), and group homes located in “close proximity” to each other.

Both CMS and the Massachusetts Department of Developmental Services have decided that all of those types of residential settings “isolate” the participants from the “broader community.”  But while the feds are not banning those particular settings outright, the state DDS, in a new policy, appears to be proposing to do just that. According to the DDS policy, residents of “noncompliant programs” will be given “the opportunity to move to a compliant setting” or else face possible dis-enrollment from the HCBS program.

It doesn’t appear to matter that the participants may greatly enjoy living on a farm, for instance, or that they may derive many important skills from farm programs that improve their self-care, receptive and expressive language, learning, mobility, self-direction, and capacity for independent living.  It doesn’t matter either that their families and guardians may value those skills highly and consequently value those programs themselves.

It also doesn’t appear to matter that thousands of people in Massachusetts are waiting for residential and other care options, and that eliminating potential options, as CMS and DDS are doing, is only going to make that situation worse.

CMS issued a new regulation earlier this year that states that the residential settings they have identified as isolating may not qualify for Medicaid funding that is specifically earmarked for “home and community-based services.”  In “guidance” provided on the regulation, CMS criticized residential farm programs, in particular, because “an individual generally does not leave the farm to access HCBS (Home and Community Based Services) or participate in community activities.” CMS said similar things in the guidance document about residential schools for people with developmental disabilities, and about other programs that “provide  multiple types of services and activities on-site.”

In its new policy based on the CMS regulation, DDS states that it will not fund or support new residential settings such as farmsteads, “gated or secured communities,” residential schools, settings that “congregate a large number of people with disabilities for significant shared programming and staff,” or even new group homes with more than five residents.

DDS has scheduled public forums on its policy and a “transition plan” to comply with the CMS regulation on November 6 at 6 p.m. at Massachusetts Bay Community College in Wellesley, and November 12 at 10:30 a.m. at Westfield State University in Westfield.

It is not clear what evidence CMS has to make the claims that people in farm-based and other congregate care programs are not provided with access to community activities.  The federal agency’s guidance offers no citations or backup information or studies to support its claims.

Moreover, even if it were true that on most residential farms and in other programs providing “multiple services” that  the residents are not regularly taken into the community, wouldn’t it make more sense to require that those programs periodically take participants into the community than to effectively ban the programs altogether?  Isn’t that throwing the baby out with the bath water?  CMS acknowledged that it received many comments about how valuable and therapeutic those farm programs, in particular, are.

By the same token, CMS appears to be ignoring evidence that there is often little or no community integration by residents of small group homes.  Yet, even CMS isn’t willing to prohibit Medicaid funding for farm programs, residential schools, or multiple group home settings outright.   In contrast to the Massachusetts DDS, CMS has stated that it will subject so-called isolating programs to “heightened scrutiny,” which may result in continuing to fund them if a state makes the case that the settings do not have institutional qualities.

CMS, in fact, specifically rejected the idea of banning group homes with more than a set number of residents.  In responses posted on the Federal Register to public comments on the proposed regulation, CMS stated that it had previously proposed defining institutional care based on the number of residents living in a facility, but that:

…we were persuaded by public comments that this was not a useful or appropriate way to differentiate between institutional and home and community-based care. As a result, we have now determined not to include or exclude specific kinds of facilities from qualifying as HCBS (home and community based services) settings based on the number of residents in that facility (my emphasis).

CMS also noted on the same Federal Register site that the goal of its new Medicaid regulation:

… is not to take services from individuals, or make individuals move from a location where they have always lived… The goal of this regulation is to widen the door of opportunity for individuals receiving Medicaid HCBS… to have a choice in how, when, and where they receive services; and to remove unnecessary barriers and controls. (My emphasis).

So CMS states that its goal is to give people choices and NOT to make people move from a location where they have always lived; but the Massachusetts DDS has made it their goal since the Patrick administration came into office to move people away from where they’ve always lived. It’s evident from the language of the DDS policy and from DDS’s own actions over the past several years that the choices of individuals and their families and guardians do not signify here. For instance, only corporate provider-run settings are routinely offered by DDS as options for people seeking residential care.

Yet while the Massachusetts DDS is going beyond what CMS apparently intended in moving to eliminate available options for residential care, CMS has given the states the latitude to do so. As Tamie Hopp of the VOR, a national advocacy organization for the developmentally disabled, noted, states have “incredible discretion in terms of how they operate their Medicaid programs.”

In a publication, VOR contends that the new CMS regulation “continues to demonstrate an ideological bias against disabled people who find friendships and benefits from living together and accessing services and amenities ‘under one roof.'”   VOR further suggests that:

…if CMS determines some settings to be too ‘institutional’… it is likely that states will realize higher costs to accommodate transitions to likely smaller, scattered settings where economies of scale will not be realized. Quality of care and access to specialized services may also be affected, exacting an untold cost on affected individuals.

For some, this is really all about cutting Medicaid programs and diverting Medicaid funding to corporate providers, who are being encouraged to operate more and more widely dispersed, and smaller, group homes.  The corporate providers in Massachusetts are apparently fine with all of this. In fact, DDS notes in its transition plan that it consulted with “a small stakeholder group (including providers, advocates and participants/family members).”   The usual advisors to DDS are listed in the transition plan, including the Arc of Massachusetts and The Association of Developmental Disability Providers (ADDP).

It may just be that the people who are truly isolated in institutions are the folks working at CMS and the Massachusetts DDS, who appear to have little idea of how things work in the real world. Someone needs free them from their ivory towers!

You can help by sending your comments on DDS’s policy to their email address at HCBSWaivers@MassMail.State.MA.US.  You can also write to: HCBS Waiver Unit, 1 Ashburton Place, 11th Floor, Boston, MA 02108.  Comments must be submitted by November 15.

Why we won’t be at the bill signing at Fenway Park

October 22, 2014 1 comment

Tomorrow, Governor Patrick will be at Fenway Park for the ceremonial signing of three pieces of legislation that are intended to make major changes in the care and services for the developmentally disabled in Massachusetts.

Many advocates will be there, but many if not most of those in attendance will be corporate providers to the Department of Developmental Services, who played key lobbying roles in the drafting of each piece of legislation last spring.  As a result, as we have pointed out, each of these new laws (because Patrick signed them for real in August) is flawed in a major way.

There really is no reason to celebrate unless and until changes are made in the laws, so we won’t be at the event tomorrow.  In a nutshell, here are the problems with the laws:

1.  National Background Check law: The law authorizes national criminal background checks for persons hired to work in an unsupervised capacity with persons with developmental disabilities.  It will ultimately require that both current and prospective caregivers in the DDS system submit their fingerprints to a federal database maintained by the FBI.  Those requirements are long overdue, but they will be further delayed under the new law.

The fingerprint requirements will not be phased in under the law for all current employees in the system until January 2019, and will not take effect for new employees until January 2016. Another provision in the new law that raises questions appears to allow employees to be hired before the results of their background checks are obtained.

COFAR and the VOR, a national advocacy group for the developmentally disabled, sent a joint message to lawmakers this week that states: “Much harm can be done to vulnerable people due to the delayed implementation and the ambiguous language that we hope was not the intent of the Legislature.”

When COFAR contacted the Legislature’s Judiciary Committee last summer to ask why the committee had approved the delays and the ambiguous provision in the new law’s requirements, a staff member referred us to Johnston Associates, a Beacon Hill lobbying firm.  A member of the firm said providers and some other advocates had pushed for the delays.  No one could or would give us an answer as to why language was inserted that appears to allow the hiring of employees before their background checks are done.

2. The ‘Real Lives’ law: This legislation had been pushed for years on Beacon Hill by the providers.  The stated intent of the measure is to introduce “person-centered planning” into the DDS care system by allowing each DDS client to “direct the decision-making process” and manage their own “individual budgets” for care.

In the wake of criticism earlier this year from COFAR, legislators removed a provision from the bill, which would have named the Association of Developmental Disabilities Providers and the Arc of Massachusetts to a board that would advise DDS in developing the person-centered planning system.  Another provision that was thankfully removed would have established a “contingency fund” to compensate providers that lose funding when clients move out of their residential facilities.

But the new law still raises a number of concerns, including providing what appears to be only a limited role for guardians and family members in the person-centered planning process.  The law also introduces a central role in the process for vaguely defined “financial management services” and other privately run entities.

In a joint statement this week, the VOR and COFAR called on legislators to “ensure that vulnerable individuals with intellectual and developmental disabilities have the support of legal guardians, when appointed, rather than financial managers or independent facilitators” in undertaking person-centered planning.

The joint statement also urged legislators to add a provision to the law ensuring that persons seeking DDS services would have an explicit choice among a range of care options and settings, including state-operated facilities and group homes, provider-operated homes, shared living arrangements, and home-based care.  State-operated care is often not presented as an option to people seeking DDS residential services.  Those persons are instead presented only with the option of corporate provider-operated residential care.

3. The DDS eligibility expansion law: This legislation is intended to fill a major gap in DDS care in Massachusetts by extending eligibility for services to people with autism and two other specified disabilities known as Prader-Willi Syndrome and Smith-Magenis Syndrome.

Until the enactment of this law,  DDS had restricted eligibility for DDS services to people with “intellectual disabilities,” as measured by a score of approximately 70 or below on an IQ test. That left out many people with developmental disabilities, including autism, even though those conditions may severely restrict an individual’s ability to function successfully in society.  If those people score higher than 70 on an IQ test, they are routinely denied services.

However, in specifying three developmental disabilities that make individuals eligible for DDS services, the new law necessarily leaves out other conditions that often result in many of the same types of functional limitations, such as Williams Syndromespina bifida, and cerebral palsy.  The new law was the product of closed-door negotiations among legislators, administration officials, and selected advocacy organizations.

In addition to changing that eligibility standard, the new law establishes a permanent new autism commission and authorizes the establishment of tax-free, individual savings accounts to pay for a variety of DDS and other services.  The commission will consist of 35 members, including legislators, administration officials, the Arc of Massachusetts, and advocates from autism advocacy organizations.   There are no seats on the commission for any advocates of state-run care for the developmentally disabled.

The VOR and COFAR urged legislators this week to make changes in the law “to better identify and serve eligible individuals in need of services and supports.”

In sum, while these new laws have many well-intentioned supporters, major changes are needed in each piece of legislation to enable it to fulfill its purpose and prevent it from doing more harm than good.  It is not yet time for everyone to pat themselves on the back as will no doubt be happening tomorrow at Fenway Park.