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Let’s honor Ally, Kim, Allison, and Gail’s choice to stay in their sheltered workshop

May 28, 2014 6 comments

It’s now up to a legislative conference committee to decide whether Ally, Kim, Allison, Gail and many others will continue their longtime participation in sheltered workshops for the intellectually disabled in Massachusetts.

Ally is 24 years old and has Down Syndrome.  She is non-verbal and suffers from anxiety, but excels at routine.   Her tasks and assignments at a workshop in Newburyport provide her with a feeling of satisfaction and importance, and with a paycheck, which she endorses and cashes at a local bank.  She then walks with her mother to a convenience store where she purchases items with her earnings.

Kim, 43, has worked in the same sheltered workshop for 23 years.  She has tried a number of times to work at jobs in the community, but those attempts have all failed for a variety of emotional, social and physical reasons.  However, by choice, she puts in a 30-hour workweek in the sheltered workshop. She lives in her own apartment with support from her parents and other family members, and from people in the community.

Allison is 44 and has been a  client of the workshop for 22 years.  During that time, she has grown in independence, but enjoys being with her peers in an organized, safe environment.   She works a few hours a week at a McDonald’s, but returns to the workshop every day. She is very proud of earning two paychecks.

Gail is 44 and has Down Syndrome.  “I like to get paid to do the work I like to do. I like to work with my friends,” she says of her participation in the workshop.   She lives in an apartment managed by the YWCA in Newburyport, makes her own breakfast and lunch, and takes a bus to the workshop every day.  Doing all of that requires 100 percent of her capability.   Gail has had several part-time jobs in the community, all of which, for a variety of reasons, have ended.  Her workshop job is the primary basis of her self-esteem.

However, the Patrick administration and state-funded, corporate providers believe they know better than these four women and their families what’s best for all of them, and are moving to close the Newburyport workshop and the rest of the sheltered workshops throughout the state.

As we have reported in several blog posts, the administration believes it would be better for Ally, Kim, Allison, Gail, and hundreds of other intellectually disabled persons throughout the state to work in mainstream jobs where they will not be “segregated” from non-disabled peers and will supposedly be able to earn higher wages.  DDS announced that it was no longer allowing new referrals to sheltered workshops in the state as of this past January, and plans to close all remaining workshops as of June 2015.

But the families of workshop participants are fighting back, arguing that appropriate mainstream work opportunities do not exist for their loved ones, and that the sheltered workshops provide what they want and need.  They maintain that when the workshops are gone, the former participants will end up stuck in DDS day programs with little to do and with no wages at all.

In late April, at the urging of families, workshop staff, and advocates, the House of Representatives inserted language in the proposed Fiscal Year 2015 budget to protect the workshops.  The line-item language is intended to prevent the planned closures of sheltered workshops if existing participants choose to remain in them.  The Senate, however, did not adopt the protective language.  As a result, the issue is now set to be decided by a legislative, House-Senate conference committee on the budget.

The Department of Developmental Services and DDS’s corporate providers are apparently already moving to head off the possibility that the conference committee will adopt the protective language in the House version of the budget.   We understand that late last week, Gary Blumenthal, president of the Massachusetts Association of Developmental Disabilities Providers (ADDP), held a meeting with administrators and staff and some parents in one sheltered workshop, and offered a vague promise to schedule another meeting with DDS to discuss keeping some of the workshops open on a limited basis.

Vague promises do not and should not take the place of clear and needed statutory language.  We hope that the message gets communicated to the conference committee, which is set to begin deliberations on the budget on June 4, that such promises will not suffice.  The protective language in the House budget should be adopted by the conference committee.

In coming weeks, we hope all six members of the conference committee will come to understand what participating in their sheltered workshops has meant for Ally, Kim, Allison, Gail and for so many others.

 

 

 

 

Setting the record straight yet again about the Fernald Developmental Center

May 21, 2014 3 comments

Every year at budget time, the corporate providers funded by the Department of Developmental Services trot out the Fernald Developmental Center and the families that have appealed the transfers of their loved ones from the center as an example of an egregious waste of taxpayer dollars.

As today’s story in The Boston Herald demonstrates, this year is no exception.  There are six or so residents left at the facility, which was targeted for closure by the Patrick administration in July 2010.  But because those residents’ appeals are still pending in court or have only recently been decided, Fernald has remained open and is now costing $11 million a year to continue to operate.  Ergo, the guardians and advocates of these residents have conspired in an evil plot to force the state to continue to pay to run this huge and unnecessary institution.

The problem with this argument is it’s not true.  The reason it costs so much per resident right now to operate Fernald is because the administration never properly downsized the center as the population there was reduced.  Admittedly, this would have taken some planning and possibly the construction on the campus of group homes for the remaining residents, which could have been operated cost-effectively.

The Fernald guardians and advocates had long proposed what we considered to be a win-win approach for both the residents and taxpayers, which would have allowed for the continued operation of Fernald and other developmental centers in Massachusetts that provide intensive, federally regulated care for some of the state’s most profoundly, intellectually disabled and medically involved residents.  The Fernald proposal included both the downsizing of the facility and a “postage-stamp” arrangement under which the remaining Fernald residents would continue to occupy a small portion of the existing campus while the rest of the campus was opened up to other uses or development.

The administration, however, refused to discuss or even consider anything other than closing Fernald entirely and moving the residents to other locations around the state.   About 14 Fernald guardians and family members exercised their legal right to appeal the decision to move their loved ones, many of whom had spent close to their whole lives at Fernald and had benefited greatly from the expert care there.

Yesterday afternoon, I got a call from a Boston Herald reporter, who was dutifully writing up a story about this outrageous situation at the behest of DDS, the Arc of Massachusetts and the Association of Developmental Disabilities Providers (ADDP).  These three organizations bring up the Fernald situation every year to lawmakers and the media in order to make the case that more state funding should go to DDS corporate providers and less to state-run programs such as the remaining developmental centers and state-operated group homes.

The Herald reporter first asked whether COFAR was supporting or working with the remaining Fernald residents.  I said that we haven’t been actively involved in advocating for Fernald for several years because the closure has been in litigation, but that we believe the Fernald guardians have exercised their legal right to appeal the transfers of their wards.  I stressed that while the cost per resident at Fernald might be very high right now, those guardians should not be blamed for it because it is the administration that never considered proposals described above to downsize Fernald and operate it cost-effectively. I also said it is incorrect to consider that closing Fernald will eliminate all costs of caring for these people. It will still be expensive to care for those residents in the community, I said, adding that no one knows the real cost because no one has ever done an independent study on it.

I added that the administration never agreed even to negotiate the downsizing and postage-stamp proposals.  I also provided the reporter with information about a key cost of DDS care that has not been counted in the developmental center closures: the cost of salaries of the executives running the hundreds of corporate provider agencies that contract with DDS.  We have looked at the tax records of more than 250 of these contractors and found that the cost of paying their CEOs, executive directors, and other executives runs to between $80 million and $90 million a year. That’s where the waste of our taxpayer dollars really is.

I wasn’t surprised to see that very little of what I said made it into the actual story, which also made it sound as though COFAR is still actively involved in the fight to save Fernald.  The story did accurately quote me as saying the state has mismanaged Fernald and could downsize it; but beyond that no mention was made in the article of the postage-stamp proposal and the administration’s failure to consider it, or of the lack of an independent study on the cost of care in the community system.  And there was no mention of the provider executive salary issue.

The story, however, does include a quote from Leo Sarkissian, executive director of the Arc, about how “outrageous” it is to be “spending that amount of money (on Fernald) when there’s the existence of very good options for each of the people living there.”  In other words, let’s blame the families for this.  And there’s a quote from Gary Blumenthal, president of the ADDP, who termed Fernald “almost a ghost town” — a phrase that provides no valid insight into the situation at Fernald, but predictably made it into the headline of the Herald story.

Sarkissian is also quoted as saying, “Let’s move on. We have so many other important things that are issues.”  To that, I’d just ask, who is it who keeps bringing this particular issue up each year?

 

Arc, ADDP, DDS putting out misleading information about sheltered workshops

May 19, 2014 1 comment

It seems the Department of Developmental Services and their corporate provider allies are spreading misleading and at times false information about sheltered workshops in their joint effort to close them throughout the state.

The battle over the workshops is now in the state Senate, which is considering budget amendments to prevent the administration from carrying out its plans to close all remaining workshops in the state by June 2015.  As we have reported, the administration considers these popular programs politically incorrect because they allegedly group intellectually disabled people together to do assembly and other types of work, and thereby “segregate” them from their non-disabled peers.

In an email sent to members and advocates on Friday, Leo Sarkissian, executive director of the  Arc of Massachusetts, maintained that sheltered workshops “do not allow for community inclusion.”

That’s just not true.  As an administrator of one sheltered workshop explained, non-disabled persons work alongside disabled individuals in that DDS-funded facility, and several disabled clients are taken into the community regularly to make deliveries and for other purposes.  “Our building …looks and feels like any other business in our community,” the administrator said.

Meanwhile, DDS and the Association of Developmental Disabilities Providers (ADDP) are misrepresenting the position of the federal government, particularly the Justice Department’s Civil Rights Division, regarding sheltered workshops.  Contrary to what DDS and the ADDP are saying, the DOJ is not requiring states to close the workshops.  That is what the ADDP contends, however, on its website and emails it is sending out.

In addition, a DDS PowerPoint used in “family forums” earlier this year stated that DOJ legal actions in Oregon and Rhode Island found that sheltered workshops “violate the ADA (Americans with Disabilities) Act and the Olmstead Supreme Court decision.”  But that’s not true either.  A DOJ letter sent in January to Rhode Island state officials makes it clear that while the Obama administration doesn’t like sheltered workshops, the Department does not consider that the workshops violate the law.  The letter notes, for instance, that:

While sheltered workshops and facility-based day programs may be permissible placements for some individuals with I/DD (intellectual and developmental disabilities) who make an informed choice to rely on them, the State of Rhode Island has unnecessarily and unjustifiably over-relied on such programs to the exclusion of integrated alternatives like supported employment and integrated day services (our emphasis).

The DOJ letter goes on to state that sheltered workshops in Rhode Island do not have to close if people choose to remain in them.  Yet, the Patrick administration is mischaracterizing the DOJ position as requiring it to close all remaining workshops in Massachusetts.  The administration must be worried that there is a chance of passage of language in the Fiscal Year 2015 state budget that would ensure that sheltered workshops remain open for those who choose to stay in them.

The effort to close the workshops is being driven by an extreme anti-congregate care ideology that the Patrick administration subscribes to.  Simply because a group of disabled people work together in sheltered workshops, the administration considers it to be a “segregated setting.”

If that’s the case, though, what does the administration think about the Gateway Arts program in Brookline, which provides art studio space and “professional development for more than 100 adults with disabilities who have talent in fine hand crafts and fine art?”

Even if it’s not technically a sheltered workshop, the Gateway Arts facility (as shown in the website photo below) would appear to be in violation of federal regulations, as far as the Patrick administration is concerned, because there are more than 100 disabled artists there. That would seem to make it even more of a congregate facility than a sheltered workshop with 20 or so disabled people and non-disabled people in it.

Please call your senator and ask him or her to support budget amendments 875 and 946, which state that DDS “shall not reduce the availability or decrease funding for sheltered workshops serving persons with disabilities who voluntarily seek or wish to retain such employment services.”  Also, please ask them to support amendment 176, which would strike the words “closure of sheltered workshops” from a budget line item that funds the transition of people from sheltered workshops into provider-run day programs.

 

Our proposal to Senate Ways and Means to redirect some DDS funding in Fiscal Year 2015

Governor Patrick and the state House of Representatives have specified funding for the Department of Developmental Services budget for the coming fiscal year that is way out of balance.

Budget legislation proposed by the governor and approved so far by the House would raise the level of funding to DDS corporate residential providers to more than $1 billion.  That’s an increase to the providers of more than $140 million, or more than 16 percent, over current-year spending in FY 2015 dollars.  At the same time, both the governor’s and the House budgets would either cut or provide much more meager increases for most other DDS line items.

Here’s a proposal to the Senate Ways and Means Committee to restore some balance to DDS funding.  As noted below, we are suggesting to the Ways and Means Committee, which is now considering the entire state budget, that at least part of the proposed increase in the Community Residential (corporate provider) line item be redirected to other DDS line items.

We have calculated that if the governor’s proposed increase in the Community Residential line item were reduced by just 2.1 percent – to a 14.7 percent increase – the Legislature could re-direct close to $18 million of the governor’s $145 million increase to the state-operated group homes, DDS service coordinators, the Autism Division, Turning 22 program, Respite and Family Supports, and the remaining developmental centers in the state.

COFAR’s proposed changes in DDS line items for FY ‘15

Suggested decreases from gov’s FY ’15 budget numbers Percent  inc. from FY ’14 Suggested increases from gov’s FY ’15 budget numbers Percent inc./dec. from FY ’14
Community res. (providers) ($18,142,085) 14.7% State-operated group homes $6,755,404 10.0%
Adm. (service coordinators) $2,714,544 5.0%
Facilities $6,254,933 -7.7%
Autism Div. $446,207 6.0%
Turning 22 $460,003 5.0%
Respite Family $1,136,399 5.0%
Total $17,767,489

The following are the details of our proposal:

Community Residential: FY ’15  budget line item 5920-2000: 14.7 percent increase

Both the governor and the House have proposed a disproportionately large increase in this line item for the coming fiscal year.  We would urge the Senate Ways and Means Committee to propose a lower increase.

The governor proposed a $145 million, or 16.8 percent, increase in Community Residential funding in FY ’15 dollars.  The proposed increase would bring the line item to $1.009 billion.  This would amount to a 63.7 percent increase in funding for the providers since FY ’07.

On April 30, the House approved a slightly lower increase in the line item to $1.006 billion – still a 16.4 percent increase from the current year in FY ’15 dollars.

If the governor’s proposed increase was reduced by just 2.1 percent in this line item, it would save $18.14 million in FY ’15 dollars, which could be directed toward other line items that have been proposed for little or no increase in funding, or else are slated to be drastically cut, such as the facilities line item.

We would note that our proposal would still allow for a 14.7 percent increase in funding for the Community Residential line item, which would bring the line item to $990.7 million in FY ’15 dollars in the coming fiscal year. This reduction in the line item increase to 14.7 percent would allow for the following increases, or reductions in proposed cuts, in the following line items:

State-operated Residential 5920-2010: 10 percent increase 

Both the House and the governor have specified a $12.6 million, or 6.5 percent, increase in funding for DDS state-operated group homes, to $206.3 million.  We would urge the SW&M Committee to increase funding for this line item by an additional 3.5 percent, which would add $6.7 million to the amount proposed by the governor in this line item.

DDS data show that close to 42 percent of the 372 individuals moved out of developmental centers in the state since 2008 were placed in state-operated group homes.  Just 13 percent of those individuals went to provider-run group homes. (We’ll say more about this in an upcoming post.)

Since 2008, 38 new state-operated group homes have been built in the state, but 3 have been closed or converted to provider-operated homes.  DDS has projected that it will build an additional 6 state-operated group homes, but will close or convert 5 state-operated facilities to provider residences.  Meanwhile, 157 new provider-operated group homes have been built since 2008.

Additional funding is needed for the state-operated group home system to preserve it as a choice for people waiting for residential care in the DDS system.

State facilities 5930-1000: Reduction from a 12.7 percent cut to a 7.7 percent cut 

The governor proposed a $15.8 million, or 12.7 percent, cut in the developmental centers line item for FY ’15, to $109.2 million.  The House approved even a deeper cut of 13.5 percent.  Since FY ’07, the line item will have been cut by close to 47 percent if the governor’s FY ’15 budget is adopted.

The administration is dismantling the developmental centers; however, since 2008, more than 45 percent of the individuals moved out of the centers have been sent to either the remaining Wrentham or Hogan developmental centers.  Some funding should be restored to this account to ensure that current conditions in the remaining centers are maintained.

DDS administration 5911-1003: 5 percent increase 

The governor proposed just a $551,000 increase in the DDS administrative account in FY ’15 dollars, to $65.9 million, which is less than 1 percent in inflation-adjusted numbers.  The House approved even a smaller increase – just 0.43 percent.

The DDS administrative account pays for service coordinators, who are being phased out of their jobs as the administration and Legislature look to award service coordination work to corporate providers.  Providing just a 5 percent increase in this line item would add $2.7 million to the amount proposed by the governor.

Autism Division 5920-3010: 6 percent increase 

Both the governor and the House specified virtually no increase in the Autism Division line item, which amounts to a cut of 1.8 percent in FY ’15 dollars.  Given the growing public awareness of the prevalence of people with autism in the population, it is troubling that neither the administration nor the Legislature appear to have placed a priority on funding this line item.

COFAR would suggest providing for a 6 percent increase in the Autism Division line item for FY ‘15, which would add $446,207 to the governor’s proposed amount.

Respite family supports 5920-3000: 5 percent increase 

Both governor and the House specified a 2.9 percent increase in this line item, which would bring it to $54.9 million in FY ’15.  The line item has been constantly under-funded and would be 12 percent lower in FY ’15 dollars than it was in FY ’07 if the governor’s budget is approved.

COFAR is suggesting a 5 percent increase in funding for this line item, which would add $1.14 million to the amount proposed by the governor and the House.

Turning 22 5920-5000: 5 percent increase 

This line item has also been constantly under-funded for many years.   Both the governor and the House specified no increase in funding for the line item for FY ’15, which amounts to a 1.9 percent cut in funding in FY ’15 dollars.

A 5 percent increase in funding for this line item would add $460,000 to the amount specified in the governor’s and the House budgets.

Our proposal emphasizes family choice

We think this proposal to redirect some DDS funding is consistent with our long-standing position that individuals and their families — and not the providers — should have the primary say in the type of care and services they receive.  Families have consistently indicated, for instance, that they prefer state care to care provided by corporate providers. Our proposal would redirect millions of dollars to neglected or underfunded state-operated programs and services.

For that reason, we are not supporting the providers’ call for an additional $5.5 million increase in the DDS community day and work account (5920-2025) because the providers want the additional money to be used to transfer intellectually disabled persons from sheltered workshops to day programs that they run.  COFAR is supporting the preservation of sheltered workshops in the state for those who choose to remain in them.

Finally, given the lack of adequate oversight of the DDS contracting system, our proposal to redirect DDS funding would at least reduce some of the increase that may well go straight into the pockets of the corporate executives of the provider companies.  We hope the Ways and Means Committee will consider our proposal before releasing their version of the budget this week.

 

 

 

It’s time to stop playing budget games with the ‘Real Lives’ bill

Once again, proponents of the ‘Real Lives’ bill have attempted an end-run around the normal legislative process by inserting the measure into the state budget bill in the House.

As we’ve pointed out many times, while the Real Lives bill is intended to provide intellectually disabled persons with choice and “self-determination” in obtaining services from the Department of Developmental Services, it has been drafted with a number of provisions that have turned it into a vehicle to benefit DDS corporate providers.

Using the same tactic he employed last year, Rep. Tom Sannicandro, the perennial sponsor of the proposed legislation, inserted the measure into the Fiscal Year 2015 budget bill, which was debated last week in the House.   Only this time, Sannicandro and the providers appear to have ignored a thoughtful re-draft of the bill by state Senator Michael Barrett that is reportedly due to be approved by the Children, Families, and Persons with Disabilities Committee any day now.  In his redraft, Barrett, who is Senate chair of the Children and Families Committee, removed the overtly provider-friendly provisions from Sannicandro’s version.

Sannicandro seems to be continuing to file his version of the bill at the behest of the Association of Developmental Disabilities Providers (ADDP) and the Arc of Massachusetts, which don’t appear to like Barrett’s redraft.  That appears to be because Barrett’s redraft includes a provision intended to prevent those organizations from benefiting financially from the legislation.

We’ve blogged many times about what we see as serious conflicts of interest posed by Sannicandro’s version of the bill, including the fact that it would put the Arc and ADDP on an advisory board created to help DDS develop the self-determination program, and would establish a “contingency fund” that would compensate providers financially when residential clients leave them for other providers (effectively paying them for not providing services). Barrett’s redraft not only removes the contingency fund as well as all references to the Arc and the ADDP from the bill, it states that more than 50 percent of the advisory board must be made up of individuals who are financially independent of any DDS provider.

Yet, the vote in favor of Sannicandro’s amendment in the House last Wednesday was unanimous.  We can only hope that most of the 150 House members who voted for Sannicandro’s budget amendment were not aware of Sen. Barrett’s redraft.  But certainly Sannicandro has known about Barrett’s redrafted version.  After all, he was invited by Barrett’s staff earlier this year — just as we, the Arc and ADDP were — to comment on the redraft.

I talked on Tuesday to a member of Sannicandro’s legislative staff, who said he didn’t know what Sannicandro’s position is on Barrett’s redraft.  The staff member, however, did maintain that passage of Sannicandro’s version of the bill as part of the budget would not necessarily “cut off” passage of Barrett’s version of the bill.  But I didn’t receive a clear answer from the staff member as to why Sannicandro would file his version of the bill as a budget amendment if he is not opposed to Barrett’s version.

We hope Sannicandro’s version of the bill will not appear in the Senate budget as it did in the House. We don’t think any version of this complex bill should be decided as part of the budget debate.  A staff member in Barrett’s office said this week that the Senate leadership is aware “we’ve (Barrett and his staff) worked hard on our redraft.”  The staff member said they were not aware of anyone planning to file an amendment to the Senate budget similar to Sannicandro’s.

We have a number of concerns even with Barrett’s version of the Real Lives bill.  But it’s a lot better than Sannicandro’s version, and it is, moreover, moving through the appropriate legislative process.

 

Sheltered workshop families win the first round in the House

May 5, 2014 1 comment

Families fighting for the preservation of sheltered workshops for people with developmental disabilities have won the first battle in the House, which upheld language last week protecting sheltered workshops from closure in the state.

The House leadership rejected an amendment to the state’s Fiscal Year 2015 budget, which would have eliminated the protective language.

The battle now shifts to the Senate where we are urging the Senate Ways and Means Committee to insert the same protective language in DDS line item 5920-2025.  The language states:

…the department (of Developmental Services, DDS) shall not reduce the availability or decrease funding for sheltered workshops serving persons with disabilities who voluntarily seek or wish to retain such employment services.

As we’ve noted, the Patrick administration has adopted the party line of the corporate providers and the Obama administration that these popular and vital skill-building programs somehow discriminate against their participants by keeping them out of the mainstream workforce.   But in moving to close all sheltered workshops in Massachusetts as of June 2015, the Patrick administration is going even farther than the Obama administration, which is not requiring the closure of sheltered workshops whose participants wish to remain in them.

In a letter dated January 6, 2014, to the attorney general of Rhode Island, Jocelyn Samuels, acting assistant attorney general with the U.S. Department of Justice’s Civil Rights Division, wrote:

No one who is qualified for integrated supported employment and/or day services should remain in segregated sheltered workshops and facility-based day programs, unless, after being fully informed, he or she declines the opportunity to receive services in an integrated work or day setting with access to appropriate services and supports, including supported employment and integrated day services. (Our emphasis)

In other words, the protective language in the Massachusetts House budget is perfectly in line with the federal position on sheltered workshops.  Even the federal government recognizes a family’s right to choose the appropriate type and level of care for their loved ones with developmental disabilities.

So why then are the Patrick administration and the Massachusetts Association of Developmental Disabilities Providers (ADDP) continuing to work to remove the House language and to shut down all remaining workshops in the state?

Please contact Senator Brewer, chair of the Senate Ways and Means Committee, and urge him to support the House language protecting the sheltered workshops.  He can be contacted at: Phone: 617-722-1540; Fax: 617-722-1078; Email:Stephen.Brewer@ masenate.gov.