Without A Net

Western Massachusetts may be facing the worst collapse of its health and human services sector in a generation. 2008 has been a year of economic turmoil for every facet of the economy, public or private, and slowly but tangibly, nonprofits in the Valley are seeing their funding dry up or get slashed outright in the state's desperate attempt to balance budgets.

In just the last six months, Massachusetts disability services have been gutted to the tune of more than $85 million, and it looks as if the bloodletting is far from over. Though the funding has been diminished, the need has not, and as nonprofit organizations are forced to try and make do with less and less, individuals in need of their services will suffer increasingly as shortages of time, money and other critical resources (people providing services, for instance) emerge, leaving widening cracks that literally tens of thousands of clients are beginning to fall through.

Easthampton's Eastworks building serves as a base of operations for Community Resources for People with Autism, one of dozens of family support organizations that have seen devastating cuts in the 2009 budget and are biting their nails in anticipation of July's announcements for Fiscal Year 2010. A critical source of information and services for over 1,000 families in Western Massachusetts, they're accustomed to seeing their bottom line shrink by attrition—moreover, even before the cuts their operating budget hadn't changed for 11 years, while the population they served continued to grow by leaps and bounds.

"Best case scenario is, we'll still have no more money to help with families' ongoing needs," says autism specialist Jamie Oltmans. "Worst case scenario is that, after 20 years, we cease to exist entirely."

The latter would be catastrophic, according to fellow advocates Lynn Ford and Carla Doyle. Governor Deval Patrick's 9C cuts have already disproportionately slashed funding for autism programs by 29 percent, or $1.8 million, despite the fact that no other group in need of support is growing as rapidly—142 new families sought assistance just in the last year. Ironically, the cuts and/or total elimination of programs could also set off a chain reaction that actually winds up costing the state a lot more money, as children who formerly were able to function in their homes with some level of outreach aid become too much for their (often) single parents to handle alone. This usually leads to more parents having to tap into Social Security disability support, so in a way cutting funding for family support programs like CRPA is like robbing Peter to pay Paul.

Further cuts could also force more children into residential programs that can cost as much as $250,000 a year per child—hardly a prudent expenditure of tax dollars. This is perhaps a classic illustration of how funding for health and human services (among other programs) has become a frustrating web of interdependency, where emphasis and resources are not always allocated strategically enough to critical stress points in the system. This inevitably results in more costly emergency stop-gap measures being enacted, and can effectively net a greater loss in funding for the whole.

"Family support programs are a much more cost-effective model for helping families deal directly with the severe impairments of their children," says CRPA Director David Specht in a recently drafted appeal for budgetary clemency. "Family support is critical to identifying families in need (especially families who have a child with a new diagnosis) and directing them to applicable services." In many ways, CRPA is like a first responder in the world of autism and its overwhelming impact on children and families who, without the organization, are at a total loss even to know where to begin looking for assistance.

In the meantime, CRPA's advocates have focused on doing what they can, holding fundraisers such as a 2004 benefit concert at Smith College's John M. Greene Hall that featured a star-studded lineup of local/national acts (including Sonic Youth, J. Mascis and Sebadoh) and raised $30,000. Coming up April 25 is a dance party benefit at Easthampton's American Legion Club Post 224 (see sidebar for details). They've also been dedicating a lot of time and effort to legislative advocacy, trying to spearhead grassroots lobbying to make the case that their funding is indispensable; on April 28th from 9:30 to 11:30 a.m. they'll be at the state house in Boston at a yearly rally in support of autism awareness.

Tapestry Health may well be one of the best models for the future of American health care, at least in the sense that it has been very successful in its street-level, community-based approach to servicing populations in need. Founded in 1973 as the Family Planning Council, the organization has focused primarily on reproductive health, but has also by extension branched out into areas of public health such as psychological counseling and the spearheading of a pioneer needle exchange program in Northampton, one of four such programs launched in Massachusetts in the mid-'90s. Now in its 13th year, the exchange, while controversial, has proven to be a significant success.

"According to the Massachusetts Department of Public Health, Northampton's lower rates of HIV among injection drug users have been linked directly to the presence of Tapestry Health's Needle Exchange," the organization's website claims. "Furthermore, with the helpful referrals and support of our trained harm reduction counselors, fully one-third of Needle Exchange participants successfully enter drug treatment programs and re-enter the community as productive, contributing members." In 2005 alone, the program removed 70,000 dirty syringes from circulation.

Of course, this isn't really shocking news; needle exchange programs have proven to be effective almost everywhere they've been implemented, and an impassioned debate still rages in the city of Springfield, where elevated HIV and hepatitis C infection rates have left many public health advocates shaking their heads while ideological politics continue to frustrate efforts at opening an exchange there. Tapestry runs clinics in the city that can refer people to the Northampton branch, but it's up to them to find their way up to the exchange from Springfield. Tapestry also serves as administrator of Springfield's WIC (Women, Infants and Children) program, which helps struggling families with things like food stamps and transitional assistance.

Despite its sterling record of real-world functionality and statistically demonstrated efficacy, this organization, too, has found much of its funding in the crosshairs of Beacon Hill budget-slashers. Tapestry reports that on January 28, 2009, "Governor Deval Patrick released his recommendations for the FY 2010 budget year, recommending over 68 percent in cuts to statewide comprehensive family planning services funded in the Department of Public Health (DPH) budget. This recommendation is in addition to the governor cutting these services by 16 percent this year in October through his 9C powers [see Fig. 2 for detailed numbers]. This cut will eliminate services to over 98,000 low-income women, men and adolescents who are uninsured and underinsured and dismantle the program's 70 sites statewide." The organization tries to add some straight-up fiscal logic to its plea for funding as well, citing data that shows that "every $1 invested saves over $4 in Medicaid costs for prenatal and newborn care."

According to a recent report by ABC-Channel 40's Shannon Hegy, "the budget cuts have already forced Tapestry Health to suspend its family planning services at its locations in Great Barrington, Athol and North Adams," a sobering fact confirmed by Tapestry Health President Leslie Tarr Laurie. And Tapestry is also moving its headquarters.

"We're actually moving our administrative offices on Thursday," says Laurie, adding that she'll miss the old Cutlery building digs in Florence, but she's also optimistic about their transition to the new space at Nonotuck Mill (the old ProBrush building, also in Florence). "They've raised the rent and we just can't sustain the expense," she laments, noting that all Tapestry's remaining clinical offices (except the aforementioned closures) will remain open in their current locations. "At least all our administrative staff will be on the same floor at the new space."

Laurie has some hope that a bit of federal money will begin to help offset the dramatic state cuts, though such systemic changes will likely take a while to enact as the new administration sniffs out all the leaks and prepares to patch whichever ones it can. At the time she spoke to the Advocate, she was leading an effort to lobby folks to voice concerns, via a public comment period, to try to change some Bush-era "conscience regulations." These were put into place to try to force entities like family planning organizations to hire people who fundamentally disagree with their positions on several key issues—a sort of imposed quota system—to assure that agents of socially conservative agendas could infiltrate the groups and perhaps run interference on controversial services or procedures.

Tapestry employs about 120 workers in the Valley, and all of them have been scrambling to continue providing services with fewer and fewer resources.

"We've been fortunate enough to have some private beneficiaries who strongly believe in our mission," Laurie acknowledged. "Without them, we'd be in much worse shape." Still, she admits that like all the nonprofits in the state, Tapestry is anxious about the approach of July 1, the beginning of the state's fiscal year and the moment of truth when the actual budget is rolled out for public inspection.

"The federal fiscal year turns around in October," Laurie notes. "That leaves a lot of organizations worried about what you do from July to October if your state funding's been cut."

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Riverside Industries, one of the largest employers in Easthampton, is an organization that offers rehab, paid employment and life skills development to hundreds of disabled people who are trying to live life like everyone else, working jobs, maintaining homes and participating in social activities. In 2008, the nonprofit reported that nearly half its support and revenues were contingent upon state funding.

"As I understand it, the cuts are aimed at our employment and transportation programs," says Ellen Paleologopoulos, a worker at the Riverside program. "If they happen, a lot of our clients will lose their jobs, which means their families or guardians will have to rearrange their personal lives and economies so that they can be with the clients during the day—some may need to quit a job so that this will be possible. Maybe even more importantly, the jobs our clients work at give them a lot of joy and a sense of worth—a chance to be contributing members of society. Their only other option is to sit at home all day or else be put into hospitals, which is pretty depressing."

Many caring, already overworked/underpaid workers like Paleologopoulos are frustrated with the situation and view the burden of cuts as unfairly heaped upon the human service sector and especially family support programs. They regard the red penciling of the budget as almost bullying behavior by Governor Patrick and members of the state Legislature.

"They're targeting a population that they think is helpless, that can't or won't fight back," she laments. "It's definitely political." Still, she notes, many of the disabled people affected by this can and do vote—something the politicians might want to take into account.

Reacting to cuts to one budget line item (5911-2000, referred to as "Community Programs"), the Association of Developmental Disabilities Providers (ADDP) reported that "11,000 Commonwealth citizens with disabilities will lose essential services that keep them from being placed in more costly state institutions. Services that are jeopardized include family support, respite, day and employment services, and services for students leaving special education programs turning 22." This single cut slashes funding by $45 million, and, coupled with a few other similar line item cuts, places the total FY 2010 blow to health and human services at around $70 million. This is in addition to the $85 million in cuts already enacted in 2009.

"With all the proposed new cuts, we could be facing over $300,000 in losses to our program, which is about 13 percent of our entire state funding," says Riverside President Deb Thomas. "If you look at the big picture within the DMR [Department of Mental Retardation] cuts, it's disproportionate—they're really slamming day services and family support." The generally sour economy is affecting Riverside as well; it also funds part of its operations from rental income on its building at One Cottage Street in Easthampton. "We've historically been full and even had a long waiting list to rent space here," says Thomas, "but recently we've had some of our biggest tenants downsize considerably, and some have had to move out altogether."

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In a recent Daily Hampshire Gazette article on the cuts, staff writer Matt Pilon reports that state representative John W. Scibak sees some hope in the legislative process, and has "made cuts to the DMR's budget his top priority." Scibak is planning a proposal to use Medicaid money included in President Barack Obama's federal stimulus package to help offset the draconian state slashings. Scibak met recently with Charles A. Murphy, chairman of the House Ways and Means Committee, to express his desire to see funding restored. Still, other area politicians are speaking to what may be the ugly truth: there's just no money anywhere.

"There are no good choices right now," says state senator Stan Rosenberg. "Just to give you some perspective, in each of the last two recessions (1988-1992 and 2001-2004) we reduced state spending by $4 to 6 billion over four or five years. This time around we have to reduce spending by $5 to 7 billion—in only 13 months. People in the region aren't really getting it. They're saying, 'We can survive this, we've been through this before.' This time it's really, really intense. I've never seen anything like this. The budget is pegged at a $4 billion deficit."

Like Scibak and other yet-hopeful state legislators, Rosenberg is eyeing federal stimulus money as a much-needed bandage. He cautions that some of the money is earmarked for specific health care and education programs, but "some isn't tagged; its [specified uses are] a little broader and it can be spread around more." He also points to $1.4 billion that's stashed in the state's "rainy day fund" from previous budget surpluses, which will help to stanch the bleeding for a while as everyone prays for the economy to pull out of its nosedive.

"Still," he warns, "the reality is there will be billions in cuts—it is inevitable, it is going to be painful and it is absolutely necessary."

Rosenberg and his fellow policymakers would do well to weigh carefully the gravitas of their budget decisions. Beyond the effects of budget reductions on those of us with special needs, there are palpable, farreaching effects of cutting programs related to potential public health problems to which even the most fortunate are not immune. In a recent fax from the Massachusetts Nurses' Association, it's noted that all the city of Worcester's public health nurses will be laid off on April 17, resulting in the loss of more than 2,000 annual vaccinations to children and the elimination of programs that monitor infectious diseases like salmonella, hepatitis and, perhaps most importantly, tuberculosis.

If elements of the state budget are reflective of the budgets of desperate municipalities such as Worcester, we may be in for a long collective nightmare of "every man for himself." The problem is, even a wealthy banker can catch TB from walking down the street, or e-coli from eating food that used to be carefully screened before reaching the marketplace but now slips through a safety net whose mesh is worn from neglect.

How to Help: websites, telephone numbers and events where you can offer support

Author: Tom Sturm

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