(Cross-posted from The COFAR Blog)
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 Syndrome, spina 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.
Prader-Willi in particular is a good example of acondition formerly excluded, but your are correct that the piecemeal addition is not good. But this DOES follow Federal examples – for example, epilepsy (my own condition) was not covered by the ADA until 2008.
And I will NEVER understand the impetus to exclude family and legally appointed guardians.
I am glad for what it does offer, but you are right to continue to fight.
Our concern about the piecemeal list of conditions eligible for DDS services is shared by the Disability Law Center in Massachusetts. In listing certain conditions and leaving out others, the new DDS eligibility law appears to violate the federal Rehabilitation Act and the Massachusetts Constitution, both of which prohibit discrimination solely on the basis of disability. I wasn’t aware that the ADA does the same thing.
Is this the best this state has to offer the disabled?
Concerns remain not only for the potential consequences of these laws—which cannot be considered unintentional at this point—but also for the process under which these were developed. Is DDS supposed to be lobbying at all? Why are entire groups excluded from the negotiations? Why does this state pass laws that directly conflict with other laws and the rights of the disabled and their families?
Apparently this administration felt that this was a priority right before election day. They’re leaving Governor Baker a big mess to clean up.
The above comment is one an example of the continuing and unrelenting criticism from COFAR towards the Patrick Administration, as well as the private provider system. For years, COFAR, it’s spokesperson, and its few members have been critical of Governor Patrick, the majority of the Legislature, President Obama and others, yet choose to treat this website as COFAR’s personal property.
It would seem more appropriate for COFAR to cross post at Redmassgroup.com since you seem opposed to the modern world. Of course, your members and especially your spokesperson, attack me and my members (of ADDP) as corporate providers, when in fact our overwhelming membership is made up of non profit organizations and charitable organizations.
Moving complex legislation in perfect form is a very difficult task. While there could have been stronger versions of these bills passed, this is what emerged from the Legislature and that progress should be celebrated, not condemned because it’s not perfect. But that doesn’t matter to COFAR, since COFAR’s goal is to criticize and object to every progressive move made in disability policy, no matter what the cost is the state or other people.
COFAR’s criticism and condemnation at all costs and objections to all policy changes and improvements has wasted millions for the state exemplified by COFAR’s battle to keep FERNALD open four years beyond it’s closing date, costing the state over $40 million in un-budgeted excess. Today COFAR’s work has kept Fernald open, housing just one individual, costing $4 million to the Commonwealth so far this year. Please consider posting on a conservative GOP web site. You guys are not Democratic progressives.
I have read dave-from-hvad’s posts here, and yours, for quite awhile, though I don’t often comment because I don’t know much about the subject, and I am also aware that the painful history of treatment of this vulnerable population makes the entire subject rather fraught.
Based on what I have been able to glean here and elsewhere, it sure sounds like the “Real Lives” bill places decision-making power in the hands of a private care-giver, while dis-empowering the individual’s family and GAL, neither of whom have the obvious conflict of interest that affects the private care-giver. I don’t think that the distinction between “corporate” and “non-profit” has any particular substance at all; the relevant criterion is that the care-giver is a private party.
That doesn’t seem to me to be particularly liberal or particularly progressive in any meaningful sense of those words.
Respectfully, the intent of the Real Lives Bill, from its authors which included self advocates, family members, Mass Advocates Standing Strong and Mass Families Advocating for Change (and not ADDP, contrary to COFAR claims), puts power into the hand of the individual with a developmental disability, not the provider community. Mr. Kassell has made such a claim but that is not accurate. ADDP, while supportive of consumers make their own decisions, were not the originators or authors of this bill; however we have great respect for the Self Advocates, and families who authored and worked for this bill’s enactment.
GIVE IT A REST ALREADY!!!!!!
If there was ever an administration that deserved to be criticized, PARTICULARLY WITHIN THE AREA OF HEALTH AND HUMAN SERVICES,its the Patrick administration. The list of various scandals and problems is never ending and on going. This past week–Dead and missing children and the commissioner is rewarded with a sweetheart deal for her pension. We learn that 500 of Patrick’s managers get rewarded with union jobs so they can’t be fired by a new administration for their incompetence. The legislature is no better with their piecemeal legislation that is worked out behind closed doors–feel good legislation that does nothing. ONLY IN MASSACHUSETTS would be celebrating this.
How exactly did FERNALD even get into your rant? Since NO WHERE IS IT MENTIONED IN THE POST and has absolutely nothing to do with the topic of discussion which just points out some shortcoming of the legislation being celebrated. I HAVE TO ASK…..WHY THE VENDETTA AGAINST THE PEOPLE OF FERNALD? WHAT EXACTLY DID THE EVER DO THAT THEY SHOULD BE THE RECIPIENTS OF YOUR ON GOING AND NEVER ENDING AND DISGUSTING ATTACKS–imagine–verbally attacking elderly, formerly neglected and abused, profoundly mentally retarded people everytime anyone has an opinion or view that is not the same as yours. ATTACKS ON THE VERY PEOPLE YOU PURPORTEDLY ADVOCATE FOR! You’ve already help this deranged administration do just about the worst thing that could be done to them, forcing them to leave their homes and their lives. ENOUGH ALREADY! PLEASE!
COFAR’s perspective has consistently attacked the Governor, the President, the Legislature, EOHHS and DDS of this Administration; and organizations similar to mine for supporting evolving human service policy that embraces closing institutions, embracing community inclusion and promoting self advocacy. Your comments are out of line with the overwhelming majority of the disability community representing antiquated service delivery and expending millions of dollars for outdated and obsolete service systems. Why post your attacks regarding human service system reforms here? COFAR is not representative of progressive Democrats. So what don’t you guys post on redmassgroup.com .
how dragging Fernald into your comments had anything to do with the post. And it would be really refreshing if you and your organization, every once in a while, would speak out about the shortcomings of the Governor, et al, because surely you can’t possibly agree with everything they do and say.
AND,you have it and me completely wrong. I have no problem with evolving human service policy and increasing inclusion and self-advocacy as long as it doesn’t run over people along the way. Doesn’t seem to be a problem for you.
Somewhere along the line the contribution made to the “evolving human service policy” by these elderly mentally retarded people that lived at facilities (sorry I can’t use the word institution) like Fernald has been forgotten other then to conger up images of ghost long past, like 50 years long past. If you are going to use the images of the past to put forth your agenda you should use all of it. The unspeakable abuse and neglect they suffered as young people is what ultimately lead to the creation of the industry you lobby and advocate for.
Its incomprehensible that there is no room in your evolving human services policy for these people unless they can live in a group home and work in a work shop that your industry provides.
This has absolutely nothing to do with being a progressive democrat or conservative republican. Its about speaking out to protect people who can’t speak or protect themselves. If the legislature enacts legislation that puts these people at risk, I would expect your organization to speak out as well. What ever happened to doing the right thing just because its the right thing to do. No ulterior motives, no political favors, not money…..just because its the right thing to do.
COFAR has pushed for the retention of FERNALD, which over the years took precious limited social service dollars, while others went with service cuts. ADDP and community advocates have applauded the Governor’s pro community and pro institutional closure agenda because we believe that inclusive services are preferable to segregated services; and because we understand that with limited tax dollars services need to be provided in a responsible manner. Keeping old antiquated institutions, like Fernald, open forever means others go without services because there is a finite amount of tax dollars available. ADDP and other community advocates believe subscribe to and believe in Court actions that require community services to be equal to or better than state institutional services. No one is saying deny people at Fernald services; but by keeping institutions open, others have lost or been denied service. That is the essence of the disagreement between COFAR and the rest of the disability community. Keeping these old institutions, buildings and antiquated service systems going in the same style for the next 10, 20 or 30 years until all of the residents pass away is something that policymakers, including federal government funders, would never allow.
I differ questions to my father, besides voting for Weld three times, a liberal Dem who has never pulled for a Republican in his life. He also worked nearly 30 years in human services for the mentally ill, including children. His perspective really guides mine. And essentially we have has a bipartisan policy of outsourcing, privatizing, and cutting services to these communities since at least the Dukakis era and it has resulted in worse, not better care.
The DCF scandal is an appalling indictment that mars Patrick’s claims to progressive values just as the sex abuse scandal rightly marred the moral credibility of Catholic bishops. I can still consider myself a devoted Catholic while dreaming of the ways Law is tortured by Satan in the next life. I can still consider myself a loyal Democrat while calling out the hypocrisy and abuse that has done on under this Governor’s nose.
Whether this policy actually helps anyone or hurts the community it hopes to help is unclear to me. I will say that calling people Republicans and other names closes debate and prevents a real articulation of why one policy is better than the other. Responding to those attacks with more name calling also seems counter productive.
So I call on all advocates to make an actual case using real facts and examples, many of is lack your experience and specialized knowledge but want to be informed about these issues.
VOR (www.vor.net) proudly joined with COFAR and CCMR seeking improvements to the National Background Check law, the Real Lives law, and the DDS eligibility expansion law. The key word is “improvements.” We are not seeking repeal of these laws, all of which move the ball forward to some degree. Much hoopla is made of the challenges, process and compromise necessary to get bills passed. While we understand this sort of give and take is inherent in the legislative process (we’ve been around 31 years), we also know that as nonprofit advocacy organizations we have an obligation to our constituency to never stop advocating when further progress can be made. We make no apologies to the Patrick Administration or other advocates who disagree with our NONPARTISAN positions calling for improvements and reform on behalf of the people with intellectual and developmental disabilities. It is their rights, quality of life and quality of care that matter to us.