People First! An album of the people behind the budget who need our help and care

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People First!
An album of the people behind the budget who need our help and care
Put People First!
Any dollars tied up in any obsolete, duplicative or nonproductive administrative systems, structures or mandates — anywhere in government — should be eliminated before reducing funding that impacts the lives of those in need of essential state services.
© 2010 Massachusetts Council of Human Service Providers, Inc.
ABOUT PEOPLE FIRST!
The People First! campaign is a group of nonprofit human services groups and interests that have joined together to tell the story of the people we serve and how potential cuts to the state budget could harm them. The organizations listed below have joined the People First! campaign because they believe that the Commonwealth’s residents and our most vulnerable citizens must be the top priority in budget considerations. The People First! campaign thanks its partners and members of the People First! steering committee who have made this collection of stories a reality. But most of all, we thank the clients and consumers of human services who took the time to share their personal stories with us. It is with you in mind that we continue to fight to put People First!
People First! Campaign Members
• • • • • • • • • • • • • • • Action for Boston Community Development Association for Behavioral Healthcare Central Mass Provider Confederation The Children’s League of Massachusetts Disability Policy Consortium Family Economic Initiative Family Service of Greater Boston Human Service Forum Lynn Nonprofit Business Association Mass. Alliance on Teen Pregnancy MASSCAP (Mass. Association for Community Action) MAAPS (Mass. Association of 766 Approved Private Schools) Mass. Assoc. of Independent Living Centers Mass. Assoc. for Occupational Therapy Mass. Coalition for the Homeless • • • • • • • • • • • • • • • • • Mass. Association of Older Americans Mass. Council for Home Care Aide Services Mass. Early Intervention Consortium Mass. Family Planning Association Mass. Health Council Mass. Home Care Mass. Law Reform Institute Mass. Mental Health Counselors Assoc. Mass. Organization for Addiction Recovery Mass. Psychiatric Society Mass. Youthbuild Coalition National Alliance on Mental Illness of Mass. National Assoc. of Social Workers of Mass. Project Able Providers’ Council Strengthening Families Coalition Western Massachusetts Service Providers
Thanks to People First! campaign members for submitting stories about their clients, consumers and staff for inclusion in the report. For more information about the People First! campaign, please contact peoplefirst@providers.org or call 617.428.3637. Design and editing of the People First! album was done by Michael Ripple and Bill Yelenak of the Providers’ Council.
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TABLE OF CONTENTS
About People First! Table of Contents Kimberly, Homemaker Services Jessica, Young Parent Program Patrick, Respite Services Anthony, Home Care Aide Emily, Foster Care & Behavior Help Raymond, Nursing and Therapy Services Danielle, Mental Health & Housing Help Edith, Home Care Assistance Justin, Personal Care Aide Amanda, Direct Support Professional The Human Services Workforce Human Services Budget — FY ’07 to FY ’11
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Some of the pictures throughout the album are used for illustrative purposes only and are not connected to the stories. The stories themselves, however, are not made up or composites; the individuals featured are real life clients who have received or provided human services in the Commonwealth.
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KIMBERLY
Kim lives in an apartment in Leominster. She was born with Cerebral Palsy and also has been diagnosed as a person with Schizophrenia. Kim has a master’s degree in education but can only work part time so the most she has been able to do in the past is substitute teach. She is waiting for the results of a CORI check as part of her application to volunteer at the Boys & Girls Club. She also served for 2 years on the Leominster Disability Commission. Kimberly used to substitute teach in Ayer, MA receiving transportation assistance from the Massachusetts Rehabilitation Commission. That assistance ended a year ago so she can no longer get to the school. Kimberly has had a homemaker for the last three years for 3 hours week. Prior to learning about the Massachusetts Rehabilitation Commission’s homemaker services she had been paying out-of-pocket. That became difficult when she was no longer able to substitute teach. Her homemaker services are an important service that allows her to remain independent in an apartment. Kim’s CP results in her being unsteady on her feet and unable to stand for too long. The aide has been working 3 hours a week doing light housekeeping including vacuuming, mopping the floor, and doing dishes. Her homemaker hours have been cut by one-third as of January 1, 2010. It is likely that it will result in less work being accomplished or, as often happens, the homemaker ‘volunteers’ additional time rather than doing less than the required work. Either way, the state’s budget is being balanced on the back of people least able to afford it.
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JESSICA
Jessica enrolled in a young parent GED program in July 2008 with a 7th grade reading level and 6th grade math level. At that time she was 19 years old with a one-and-a-half year old daughter. She attended classes regularly, often receiving the monthly award for highest attendance. Jessica focused and worked hard, and in 6 months raised her reading grade level to the 9th grade and her math level to the 7th grade. In October 2009, she passed four GED tests on the first try. However, she had difficulties with her writing, frequently tearing up her essays in frustration. Jessica worked several times a week for a couple of months with a tutor at the YPP on writing mechanics. Her second try at the GED test increased her writing score by 110 points. Her goal is to gain many more than the 20 remaining points she needs to pass. Throughout this time Jessica’s self confidence has noticeably increased, realizing that she can succeed and has a lot to offer. Because of her perseverance, good attitude and willingness to work with tutors she has made excellent progress. Without assistance from the Young Parent Program, she would have had a difficult time becoming more confident and proud of herself. As she prepares for her last test, Jessica is simultaneously filling out her application for Quinsigamond Community College. She is feeling very enthusiastic about attending college in September. She is interested in technician fields and is shadowing a vet technician for the YPP’s Career Shadow Day. However, young parent programs like Jessica’s rely on state funding to survive. Without state funding, determined young parents will not have access to the services they need to support their families and give back to their communities.
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PATRICK
Patrick is a 29-year-old man diagnosed with autism who lives with his mother in Franklin, and while he receives day supports through the Department of Developmental Services, he cannot receive respite services due to recent budget cuts. His mother has a serious medical condition, and when she had an emergency this winter and had to go to the hospital, Patrick needed to pack a suitcase while going to his day program, and his mother gave him a note explaining the situation. When doctors told Patrick’s mother that she would have to stay in the hospital for two to three weeks, there was no one available to help care for Patrick since his respite services had been eliminated. Without backup systems and support, Patrick’s mother ran out of options and called DDS to plead with Patrick’s day program to protect the health and safety of her son. One of the day program staff members agreed to bring him home for three days until the state could find someone to serve as an emergency respite worker for the weeks she would be hospitalized. DDS finally secured a temporary respite home for Patrick, although other problems began to arise. Patrick has a great fear of the dog living in the home, and while the placement was created, Patrick had to endure great fear and anxiety in the temporary respite home. It was the only accommodation available. Cutting respite services to individuals like Patrick is unfortunate, and these important services must be included in the budget so people in similar situations will be able to stay home and receive care. 6
ANTHONY
Anthony is an individual with mental and physical disabilities who receives home care aide services through the Mass. Rehabilitation Commission, but due to recent budget cuts, the time he receives per week has been cut by 20 percent. Because of his disabilities, he had mainly been receiving help cleaning his home and washing his clothes. The cutback in hours, he said, makes it hard for him, as he now has to perform these tasks on his own. “This leaves my home not fully cleaned and my clothes wet,” Anthony says. “When my clothes come to me wet, I need to use ... clothes hangers to dry them. This is hard on me.” Anthony has a brain tumor, and because of it, he needs assistance with physical tasks. He says he has difficulty with balance, coordination and dexterity, as well as other issues. “Imagine vacuuming, mopping and doing laundry with virtually no balance,” Anthony recalls of his difficulties. “Believe me, it is not that theoretical and not that practical. It is hard trying to balance and do body movements at the same time. There were many days I got hurt.” Anthony hopes the funding is restored and he is able to regain the services that he once had. “This service has provided me with not only a home care service, but a service of self-reliance, independence and social association,” he said. “I love my independence. Please do not take this service away and please do not cut this service.”
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EMILY
Emily is a teenage girl who was a client of a community girls program in March 2008. When she came to the program, she presented with oppositional defiance, poor grades and family functioning issues. Her mother had trouble putting limits on her children and had her own mental health issues. But in just a few months, by June 2008, Emily’s academic troubles were subsiding. She attended therapy sessions with her mother and they began to talk more with each other. Emily also developed a plan for anger management and her behavior improved. Things were getting increasingly better. In August 2008, however, things became worse. The girls program closed its doors because of significant financial losses and a lack of referrals from the Department of Children & Families. The lack of state funding meant Emily needed to be placed in a temporary program so a foster home match could take place. But this placement became unstable and Emily acted out once again. DCF placed her in another group home, where she still resided at the beginning of 2010. The plan is now to step her down to intensive foster care. Emily’s story is unfortunately not unique. This is simply one example of how a program closure can affect the decision to switch a child’s placement and interrupt the steady progress the child is having. If her program were appropriately funded and remained open, Emily could have continued the work she was doing and the progress she was making. Sadly, budget cuts forced her to cut her work short, and in other programs, she was not given the support she needed and regressed to the negative behavior she had previously displayed. 8
RAYMOND
Raymond is a man with spastic quadripareses who needs total assistance for all activities of daily living. Using a wheelchair, Raymond requires regular nursing and therapy services while communicating purely through facial expressions. Raymond was in the Fernald Development Center until 1985 when he was able to move back to North Grafton and be placed in a community setting operated by a private, community-based provider. While he was never able to leave the grounds of Fernald during his time there, his time over the last 25 years has been incredibly different. He has been on vacation to Cape Cod, New Hampshire and Disney World, and enjoys dining out, going to the movies and shopping. He is also a huge fan of the New England Patriots and the New England Patriot cheerleaders. He has spent the past several years attending a local fundraiser for diabetes, and through attending the event, Raymond has been able to meet New England Patriot nose tackle Vince Wilfork. This year, Raymond will turn 60, and he credits his longevity to having such a dedicated staff and close relationships with his housemates. By living in a community setting, Raymond finds that his life has been enriched, and the people who work with and talk to Raymond on a daily basis enjoy his company. Without the full support of nursing and therapy services in the budget, it would be difficult for individuals like Raymond to receive the care they need to achieve success in community-based settings. Because Raymond left an institution and went back to North Grafton, he has lived the independent life that everyone should have and at a lower cost to the state than if he had been in an institution. 9
DANIELLE
Danielle entered a residential program when she was 13 years old, and even she admits that “90 percent of the time I was in trouble there.” Since then, there were ups and downs for her, but eventually she made her way to a community-based group home where she was finally able to receive the mental health supports that she needed. Now, many years later, Danielle says the turning point is when she finally was allowed to have a role in her treatment thanks to the wonderful staff she was working with. “I hadn’t had a lot of freedom and I spent a lot of time in adolescent programs,” she says. “This was my first adult program, the staff treated me as an equal and they listened to me about what I wanted to do for my treatment. That helped me a lot.” Danielle made such progress, the staff even suggested she was ready to leave the community-based group home in which she had been living and transition to her own apartment. She considered all her options, but finally found the right place for her. “When I saw the apartment, I absolutely fell in love with it and made my decision. If I hadn’t gotten help, I probably wouldn’t be here today.” Danielle realizes the importance of mental health services, and she hopes the state continues to fully fund the mental health system so individuals like her can get the assistance they need. “If people just go on dealing with their problems, it builds up and they can do drastic things,” she says. “The state needs to really recognize that this assistance is key to helping people with mental health issues.” “Mental health ties right into physical health,” she adds. “And I appreciate the staff listening to me, helping me a lot and encouraging me about what I want to do with my treatment.”
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EDITH
Eighty-six year old Edith had a stroke in August 2009. The stroke, complicated her other medical conditions which included macular degeneration, high blood pressure, heart disease, arthritis and COPD. She was discharged from a rehabilitation facility in September and returned home, and was referred to an elder services organization for home care services in early November. Edith’s daughter was assisting her mother with many tasks, including taking her to multiple medical appointments and helping her with medications. She could not continue to provide this level of support to her mother and requested services. During the home visit, Edith reported during the previous night she had left her apartment and went to her neighbor’s door in the middle of the night. Edith became locked out of her apartment and was assisted by a maintenance person. Her eyesight is also worsening, and her daughter is not always available to help. As her daughter provides some support to her and lives nearby, Edith has been placed on a wait list for home care services. There are currently more than 2,000 people like Edith unable to get into the state’s home care program — the largest waiting list in the program’s 36 year history. Based on the budget proposal for 2011, which provides no additional funding over the current year's level, the waiting list is not expected to ease for the coming year. If family members are providing any assistance, elders are likely to be placed on a waiting list, given the shortage of home care funding. There is currently no waiting list for nursing home beds. By the year 2015, there will be nearly 11,000 surplus nursing home beds in the Commonwealth, yet the form of care that seniors prefer has a wait that could last for many months. Elders who go without services for extended periods are at greater risk of needing more intensive forms of support. 11
JUSTIN
A junior at Berklee College of Music, Justin locked himself out of his apartment and in trying to lower himself onto a balcony, he accidentally fell 22 feet, breaking his neck in three places. Justin is a quadriplegic who depends on personal care aides and his loving family for all of his daily tasks. While he can move his shoulders and elbows, he is dependent on others for his hygienic needs and activities of daily living. He is helped out of bed, receives assistance with showering and dressing, needs help to stretch in a standing frame and requires assistance to get in his electric wheelchair. He receives four hours of care in the morning and four more hours of similar care in the evening. His mother, Dolores, cares for Justin as much as she can. She works as a nurse, often as much as 60 hours a week, and cannot care for Justin during the time she is working. She credits the PCAs with giving her an incredible amount of help. “Justin would not be able to stay at home without the help of his PCAs,” Dolores says. “His care would be impossible for one person alone. ... His PCAs have become part of our family.” Budget cuts could possibly mean the amount of PCA time Justin receives would need to be scaled back. Even by eliminating just a few hours, it would mean Justin would not receive the help he is currently receiving and his family may need to explore other options. “Without his PCAs, Justin would have to go into a long term facility or nursing home,” Dolores worries. “What kind of life would that be for a 23-year-old man? Justin can remain at home with the assistance that is provided by his PCAs.” 12
DIRECT SUPPORT PROFESSIONAL
Amanda is a vocational case manager for deaf services. She’s fluent in American Sign Language, sensitive to the cultural dynamic of the deaf and hard of hearing community and is her agency’s “Employee of the Year.” “Amanda’s ability to recognize and communicate with people with limited communication skills has many times been the catalyst that has gotten them the services they needed, be they medical, financial, residential or social,” Amanda’s supervisor says. Yet she still is chronically underpaid, making less than $30,000 per year despite her specialized training and cross talents that make her a valued member of her organization’s team. She is one of many direct support professionals across the state who find themselves in a similar situation. Amanda is also a wife and a mother. Her husband works long hours as an EMT and their two boys attend Boston Public Schools. While her husband picks up every additional shift he can and works a second job, the two of them still cannot fulfill their lifelong dream of owning a home. While people performing the same job in the healthcare sector make about 40 percent more, Amanda stays because she loves her job and the clients who make it special. “I love the people I work with and the work that I do,” Amanda says. “But direct support professionals should be fairly paid for the work that they perform and the individuals they help.” The Salary Reserve, a fund of $28 million for workers making $40,000 and under, has not been included in initial FY ’11 budget proposals. It provides a basic cost-of-living increase for these lowest-paid employees. Employees like Amanda hope the legislature will include the fund in their budget proposals this spring. 13
AMANDA
THE HUMAN SERVICES WORKFORCE
In just seven years, the number of human service employees in the state went from just over 95,000 to to nearly 112,000 — an increase of 17.1 percent. The human services sector continues to provide jobs for Massachusetts.
The increase in human services workers, however, is smallest in Suffolk County. While human services increased 18 percent across the U.S. and nearly 15 percent in the state, employment only rose 5 percent in Suffolk County. There is a projected 17.6 percent increase of need between 2006 and 2016. Human services positions have lower salaries than most comparable sectors. The largest difference is with direct service positions, where staff makes about 40 percent less than comparable employees in the healthcare sector. This large difference makes it difficult to recruit and retain qualified employees.
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HUMAN SERVICES BUDGET FY ’07 TO FY ’11
The final budget figures include funding approved in the initial budget, known as the General Appropriations Act (GAA), as well as any subsequent supplemental or deficiency budgets, including any reductions made by the Governor under Section 9C of Chapter 29 of the Massachusetts General Laws. Section 9C requires that the Governor make immediate cuts if state revenues fall significantly below the amount projected in the GAA. For the current year, the chart displays budget proposals offered by the Governor and Legislature. Budget figures not only include funding appropriated by the GAA, but also funding available as a result of pre-budget transfers and other budget adjustments. Pre-budget transfers include certain taxes and fees that are automatically directed to fund specific items in the budget. These pre-budget transfers, like line item appropriations, are a way the state spends money. As a result the chart will show a higher total state budget than the GAA for each fiscal year. The chart also provides budget adjustments to budget totals that allow for accurate “apples to apples” comparisons of funding for programs. In a few cases, funding that was once a part of the budget is moved off budget and is funded through fees dedicated to that purpose (and vice-versa). In both cases MassBudget “adjusts” the totals allowing accurate across-year comparisons. The FY 2009, 2010 and 2011 final budget numbers also include funding that the state received from the American Recovery and Reinvestment Act. Finally, these numbers have been inflation adjusted using an index for goods and services that governments purchase. All information courtesy Massachusetts Budget & Policy Center. Numbers in chart are expressed in thousands of dollars.
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