 |
||||
|
||||
|
|
|
||
January 3, 2007
Mental Health Housing Rally in
Albany on January 23rd: Take action and fight for the Campaign’s plan to reform, preserve, and develop community-based housing with support services for all New Yorkers with mental illnesses. 10:30am: Registration, Breakfast & Background Presentation on the Campaign Noon: Rally Kick Off, Lunch The Day’s Event Will Include: Speakers—March Around Capitol—Petition Drive—Legislative Visits—Packet/ Leaflet Drops—Pictures/ Video Interviews—Pizza—T-shirts—Buttons—Balloons! The
new Governor and the State Legislature need to hear from you about
the importance of ensuring that all New Yorkers with mental illnesses
have access to housing and services. Participants must register
by Monday, January 8 at www.campaign4housing.org,
call (518) 465-7330 or e-mail marcyw@lobbywr.com.
PRESIDENT
SIGNS CRITICAL RESPITE BILL FOR FAMILY CAREGIVERS Washington, DC (December 21, 2006) - The Lifespan Respite Task Force, a coalition of over 170 national, state, and local organizations, applauds the signing of The Lifespan Respite Care Act of 2006 (HR 3248) into law. The bill was introduced and championed in the US House of Representatives by Rep. Mike Ferguson (R-NJ) and James Langevin (D-RI). A companion bill in the Senate was cosponsored by Senator Hillary Clinton (D-NY) and Senator John Warner (R-VA). The Lifespan Respite Task Force includes a diverse group of national and state organizations: state respite and crisis care coalitions; health and community social services; disability, mental health, education, faith, family caregiving and support groups; groups from the child advocacy and the aging community; and abuse and neglect prevention groups. Family caregivers are providing 80% of long-term care in the US, a level of care valued at $306 billion a year, more than what is spent on nursing home and paid home care combined. Even though most families take great joy in providing care to their loved ones so that they can remain at home, the physical, emotional and financial consequences can be overwhelming without some support, such as respite. Respite provides the much needed temporary break from the often exhausting challenges imposed by constant caregiving. The
new law would authorize $289 million over five years for state grants
to develop Lifespan Respite Programs to help families access quality,
affordable respite care. Lifespan respite programs are defined in
the Act “as coordinated systems of accessible, community-based
respite care services for family caregivers of children and adults
with special needs.” Specifically, the law authorizes funds
for: When the bill passed the House, Rep. Ferguson, whose own father was a caregiver for his ill mother for 6 years said, “Today’s action by the House of Representatives represents not only an important victory for family caregivers nationwide, but it also sends America’s caregivers a clear message: Your selfless sacrifice is appreciated, and help is on the way.” “On behalf of over nation’s family caregivers who desire to keep their loved ones at home despite limited support, we commend Rep. Ferguson, Vice-chair of the Health Subcommittee of the House Energy and Commerce Committee, Rep. Langevin, and Senator Hillary Clinton (D-NY) and Senator Warner (R-VA) for their leadership, and especially want to thank them, their colleagues from both sides of the aisle, and the White House for taking action to help the burgeoning numbers of family caregivers,” said Jill Kagan, Chair of the National Respite Coalition, and facilitator of the Lifespan Respite Task Force. “Relatively minimal investments in respite help family caregivers provide this care at home and in the community. At a time when federal and state fiscal resources are limited, this is the most compassionate and fiscally responsible thing we can do, and a most welcome gift in this holiday season.”
Thanks to a law approved by the NYS legislature and signed by Governor Pataki in November 2004, the state's Most Integrated Setting Coordinating Council (MISCC) was established and, according to the Governor's press release, "charged with implementing the Olmstead Decision in New York State" in way that would enhance "New York's commitment to developing an approach to providing services in integrated settings that are appropriate to the individual needs of New York's citizens with disabilities.” In accordance with the legislation, the MISCC would issue and monitor the implementation of recommendations to "each state agency which operates, licenses or funds programs, services, and supports for people with disabilities" including the Department of Health (DOH), the Office of Mental Retardation and Developmental Disabilities (OMRDD), the Office of Mental Health (OMH), the Office of Alcoholism and Substance Abuse Services (OASAS), the State Education Department (SED), the State Office for the Aging (NYSOFA), the Office of Children and Family Services (OCFS), the Department of Transportation (DOT), the Division of Housing & Community Renewal (DHCR), and the Commission on Quality of Care and Advocacy for Persons with Disabilities (CQCAPD)." The legislation omitted the NYS Department of Labor. The MISCC also included 9 advocates, 3 consumers, 3 providers and 3 individuals involved in the provision of services to seniors. In developing the plan, the Council, chaired by Thomas Maul, Commissioner of the Office of Mental Retardation and Developmental Disabilities, held public forums in New York City, Albany, Syracuse and Buffalo. Through the forums, MISCC members and staff had the opportunity to hear from more than 150 people with disabilities, family members, advocates and service providers. After many months of deliberation and after a subset of the advocates (later called the ‘Ad Hoc Committee”) found an initial draft unacceptable, Commissioner Maul authorized the Ad Hoc Committee to substantively re-draft the report. Ad Hoc Committee members included consumer representatives Kim Hill (Assembly appointee), Constance Laymon (Governor’s appointee) and NYAPRS executive director Harvey Rosenthal (Senate appointee), provider advocates Pat Fratangelo (Governor’s appointee), Karen Oates (Senate appointee), Cliff Perez of the Independent Living Center of the Hudson Valley and Tracy Crandall, then of the Center for Disability Rights. Late last month, state released the first MISCC report. The report, which will be available on the NYAPRS website later today, was greeted by some of the advocates on the group "with some hesitation and reservation," since we found that "this report does not quite meet the requirements of the law that established the MISCC" and "falls short of the hopes and expectations of the thousands of New Yorkers with disabilities who are currently in need of services being provided in a more integrated setting." The advocates ultimately supported the report's going forward, seeing it as a "blueprint that, at minimum, sets the floor for Governor-Elect Spitzer and his staff to build upon, rather than having to start from scratch." They also pointed to "several provisions that jumpstart activity (in that) "it creates consumer advisory groups in each state agency to push for strong, measurable action." and "require(s) the MISCC to continue to meet, at least quarterly, where we can continually raise the bar."
At the direction of MISCC chair Tom Maul, who is credited by the advocates with keeping the spirit of the MISCC law alive throughout a long, circuitous process, MISCC members comprised five working committees: • Assessment, which reviewed assessment processes utilized by various agencies to identify individuals with disabilities who could benefit from services in the most integrated of settings; • Community Services, which examined community-based services and their funding streams, as well as ways to improve the system to ensure that it is comprehensive and accessible, including public information and outreach considerations; • Data, which endeavored to identify the numbers of individuals within each service system in need of service within the most integrated setting and ways to improve data collection efforts. • Quality Assurance and Improvement, which examined processes for the evaluation of services to ensure that the provision of such occurs in the most integrated setting; and • Transportation, which explored means to promote local human service agency cooperation relating to an all important need for individuals served in a most integrated setting: transportation services."
• Each state agency which operates, certifies, licenses or funds programs, services or supports for persons with disabilities will adopt the general principles and guidelines set forth in the report. • Each stage agency will review its services against the general principles and guidelines and make changes in agency policies and operations as warranted. Each state agency will also review the recommendations in this report and implement those that are feasible and appropriate. • Using a format to be developed by the Council, each state agency will prepare and annually update a Most Integrated Setting Implementation Plan which details the actions taken over the preceding year and those to be taken in the upcoming year. The plan will include measurable standards by which the agency can demonstrate its accountability to MISCC general principles and guidelines. • Each state agency will establish or identify an existing stakeholder group, with strong representation of consumers and advocates, to assist the agency as it develops and implements its Most Integrated Setting Implementation Plan. • The Council will establish a standard format for the Most Integrated Setting Implementation Plans to be submitted by the state agencies as well as a timetable for submission of the plans to the Council. The plan will address the state agency’s plans to address recommendations set forth in this report. • The Council will continue to meet at least quarterly to review the state agency Most Integrated Setting Implementation Plans, to assess progress made by the state agencies and to advise the Governor and Legislature regarding the state’s progress in providing services in the most integrated community-based setting. These meetings will be open to the public and will be held in a space large enough to accommodate this requirement."
Following are some excerpts by NYAPRS from the report's 'bottom line', official recommendations to state agencies whose implementation will be facilitated by the stakeholder groups and monitored by the MISCC every 3 months. Many of the recommendations are rather general, despite efforts to make them very concrete and measurable. The advocates are expecting that, in the first year of the new Spitzer Administration, much more specific recommendations will be developed, similar to Virginia's report (see http://www.olmsteadva.com/downloads/AppendixII.doc). Assessment • Institutionalized individuals should be assessed to determine who could appropriately benefit from services and supports in a more integrated setting. • Assessment processes should be developed to ensure that, for individuals who are appropriate for community-based services.., all such services and supports are first exhausted before an institutional placement is implemented. • As part of the State’s Point of Entry initiative, coordinated by the New York State Office for the Aging (NYSOFA) and Department of Health (DOH), an entity in each county should be identified to conduct assessments of individuals’ service needs and to provide information on and referral to local community-based services and supports as an alternative to institutionalization. Once NYSOFA/DOH implement a Point of Entry system, training should be provided to stakeholders such as hospitals, nursing homes, home care agencies, consumer groups and other interested parties.... Community
Services • There should be regular and ongoing evaluation of the service system with evaluation results used to make ongoing systems’ changes. • An evaluation should be performed to assess the extent to which services promote “most integrated setting” outcomes. The need for funding improvements, service reconfigurations, and necessary enhancements should be assessed. The extent to which “money follows the person” in service funding and delivery should be examined. • Each service type should be evaluated against the following criteria: Accessibility and appeal to consumers, Appropriateness to consumer needs and preferences, Person-centeredness, Cultural sensitivity in the delivery of services, Empowerment afforded the consumers served, The extent to which the dignity of risk is recognized, The extent to which each service promotes independent living, employment, socialization and education, The cost effectiveness of the service and the availability of the service in all of the state’s counties. • There should be an evaluation of the extent to which consumers, providers, advocates and localities are engaged in identifying needs and service planning. • The availability of information on services and supports should be assessed with a determination made as to whether information is provided in a variety of culturally diverse and accessible formats. • The extent to which service information is available to discharge planners, service coordinators and others with placement responsibility should be assessed and training should be undertaken, if necessary, to increase and promote the education of discharge planners. • Each agency should demonstrate that people are being transitioned into most integrated settings. • There should be local point of entry systems that provide outreach, education and referrals so that individuals and their families can easily access and navigate the service system. • Each affected state agency should evaluate the availability of direct care and home care workers and develop policies to address this issue.... • The service system should be reviewed to identify the need for less-intensive but critical community supports such as respite, and vehicle adaptations. • The service system should be examined to determine whether it promotes a “medical model” rather than a system which focuses on rehabilitation, consumer empowerment and employment. • The entire disabilities’ service system should be reviewed for bias toward congregate and institutional living models with plans developed to give people other more integrated and community-based options. • Meeting the needs of people with disabilities should continue to be a priority in state-funded housing initiatives. • The state should continue to support local housing authorities in their applications for funding, as well as pursue any such funding that may become available to augment State public housing and State-administered Section 8.... • In the transportation area, state tax policy makers should consider providing tax incentives to make private vehicles accessible. • Funding for expanded transportation services by not-for-profits, including the State Education Department’s Independent Living Center network, should be explored. This funding should be directed to activities associated with daily life (e.g. shopping, leisure time activities) in addition to transportation provided to and from government-funded programs. Data • Each state agency should establish and maintain data needed for service planning that provides information about individuals in institutions and those supported in the community (NYAPRS note: the law explicit requires the establishment of waiting lists for housing and supports necessary to help New Yorkers with disabilities to live and work in the most integrated setting). • Data should be available to assess each state agency’s success in assuring that individuals receive appropriate community-based services at a reasonable pace. • State agencies should address the relevant areas of a person’s life – for example, residential, social, employment and education-related community supports and services as derived from individualized assessments, preferences and goals and in accordance with the principles, guidelines and recommendations included in the Assessment Section of this report. • Each state agency’s data should have information on the current state agency operated, licensed or funded residential, social, employment and education-related settings of those served and, the length of time they have spent at current settings and dated goal statements determining preferred settings. • Data should also track each state agency’s success at demonstrating that people are being transitioned into the most integrated setting. Quality
Assurance • Standards and benchmarks used to assess services should incorporate the values of self-advocates. • Evaluation results, standards, and benchmarks and quality improvement initiatives should be reported back to the MISCC annually. Affected state agencies should seek advice from the MISCC in identifying best practices in quality assurance for replication. • Formal processes should be developed which address the complaints (if appropriate) of individuals served and which require corrective action where care deficiencies are identified from evaluation results. These “fixes” must be timely. Establishment of an ombudsman should be considered as a possible way to meet this recommendation. • There should be a continuous improvement process in service delivery which uses quantitative data and quality information obtained from evaluations. • Information and/or training should be made available to the people served to assist them in understanding their right to quality services, along with information and/or training on how to identify abuse and neglect. • Clear service provider standards should be developed which address the rights of people served and which include fully developed appeals and grievance procedures. • Self-advocates should play a role in monitoring the effectiveness of programs and services. • The role of local government in quality assurance should be addressed. • All of the “General Principles and Guidelines” specified above should be incorporated into the state agencies’ quality assurance system. Transportation • NYS DOT should review state rules and regulations, including those associated with federal transportation funding streams, to identify and overcome existing barriers to coordinated transportation between and among state agencies. To achieve this end, the following approaches should be considered: - Encourage pilots which pool public and para-transit, taxi and not-for-profit van resources. The pilots should be implemented in various regions of the state and should be based on existing best practices. - Collect data on the pilots to assess the extent to which they demonstrate an increased number of people served, expanded hours of service, and availability of transportation to additional destinations. - Use the success of the pilots to promote coordination for entities receiving public monies. - Enhance efforts in applying for the U.S. Department of Transportation Grant Programs including “United We Ride” funding. - Review ways to encourage faster response times by para-transit providers to trip requests. - Review the state’s policy regarding accessible hotel shuttles and transportation to airports and train stations. - Encourage the participation of people with disabilities on boards of regional transportation authorities. - Encourage disability sensitivity training for transportation authorities. - Encourage the availability of accessible taxicabs throughout the state. - Where federal and/or state laws govern, the NYSDOT should advocate for enforcement organizations to implement appropriate enforcement procedures. • Examine use of “ambulettes” and “medicabs” in Medicaid-funded transportation. Use of accessible taxis, where appropriate, should reduce costs. • Consider use of accessible ramps instead of lifts in fixed-route and para-transit buses when appropriate. • Review the maximum weight for transporting people in wheelchairs. To avoid discrimination against “people of size,” consider increasing the load weight capacity of an access ramp or a lift to one thousand pounds as vehicles are purchased. • Encourage the transition of people who are able from para-transit service to less costly fixed route service, utilizing both incentives (e.g. reduced fare) and public education. • Encourage joint planning between the transportation policy makers and those from the NYS Division of Housing and Community Renewal (DHCR). This will allow coordination of accessible transportation and low cost housing resources. Promote this kind of cooperation at the local level as well. • To heighten awareness of transportation barriers, give consideration to the appointment of people with disabilities to regional transportation boards.
As the MISCC progressed, Chairperson Thomas A. Maul asked state agencies represented on the council to report on “Most Integrated Setting” actions undertaken since the MISCC’s inception. Following are brief descriptions of some of them, excerpted by NYAPRS: • Implementing three federal Real Choice Systems Change Grants for Community Living. • Establishing a state-wide, but locally-based, Point-of-Entry (POE) System for long term care which will begin by providing information, initial screening and assistance to all those interested in exploring the available options for long term care in New York State or who are already receiving medical or other supportive services through NYSOFA programs, Medicaid or private pay providers • Establishing a new Nursing Home Transition and Diversion Medicaid Waiver to enhance the opportunity for individuals eighteen years of age and older, who would otherwise be cared for in a nursing facility, to receive needed services in their community. • Establishing a voluntary Rightsizing of Nursing Home Demonstration Program designed to promote the development of alternative levels of care. • Building on the initial success of the Self-Determination project, OMRDD has reached its original target for people served and is planning a further expansion. The project allows individuals to self-direct their services through a portable individualized budget which they manage through a Fiscal Intermediary (OMRDD); • Expanding use of person-centered planning and self-determination to identify needs and personal goals. This includes a special OMRDD Commissioner project with the Self-Advocacy Association of New York State (SANYS) in which self-advocates meet with Developmental Center residents to provide information on community living options (OMRDD); • Developing individualized housing options under the New York State Options for People Through Services (NYS-OPTS) initiative, including non-certified residential opportunities with individualized supports and services (OMRDD); • Implementing and expanding the “Access to Home” program to provide local program administrators with grants of up to $200,000 to make environmental renovations to the homes of persons with physical disabilities and sensory impairments. To date, $15 million in program resources have been made available (DHCR); • Implementing New York/New York III, the $1 billion supported housing initiative announced in November 2005 which builds on the success of prior housing initiatives (and provides new housing to 5,500 units of supportive housing for individuals and families with serious mental illnesses who are chronically homeless or at risk of homelessness; • Implementing the Home and Community Based Waiver Program (a $62 million annual investment (provided in SFY 2006-07 State Budget)...which enables seriously emotionally disturbed children at risk for institutional placement, to remain at home and in school while receiving a comprehensive and well-coordinated array of services appropriate to individual need. • Implementing the closure of Middletown Psychiatric Center, permitting $7 million realized by the closure ito be reinvested to expand State-operated services in Middletown’s previous catchment area of Orange and Sullivan Counties (OMH); • Implementing Personalized Recovery Oriented Services (PROS), a comprehensive recovery oriented program for individuals with severe and persistent mental illness.... • Enhancing the vocational rehabilitation process through the use of peer mentors and supports aimed at improving employment outcomes (SED); • Working with Independent Living Centers, implementing a new model for training staff that work directly with individuals who are at imminent risk of nursing home placement. The training teaches staff to use community resources to keep people at home (SED); • Fostering inter-agency use of accessible vehicles by awarding bonus credits to vehicle grant applicants who agree to coordinate vehicle usage with other not-for-profit agencies that are not grant recipients (DOT).
Timothy's
Law Gives Hope to Mentally Ill After 10 days at an upstate hospital, Victoria Scott's youngest of four children suddenly found herself Thursday at the Rockland Children's Psychiatric Center in Orangeburg. The 13-year-old girl, who loves drawing and painting, had been hospitalized so physicians could find the right mix of medications to manage her bouts of depression. But when her health insurance coverage ran out, there was no choice but to transfer the girl to the state psychiatric center, said Scott, a 40-year old Spring Valley resident. "Now they're going to have to start over with her," said Scott, referring to the new team of physicians treating her daughter. The hospitalization of Scott's youngest child coincided with a major change in health care for the mentally ill in New York state. On Dec. 22, Gov. George Pataki signed a law that attempts to eliminate restrictions on insurance coverage for psychiatric illnesses that don't apply to other health insurance coverage. The legislation is named Timothy's Law, after Timothy O'Clair, a 12-year-old Schenectady boy who committed suicide in 2001. Advocates for the mentally ill have long maintained that the disparity in treatment is unfair and that New York state was part of a minority of states failing to address the issue. An estimated 39 states have laws that attempt to deal with the gap in coverage for the mentally ill. "If someone had cancer or heart disease, they would be allowed to have full coverage, but we are talking about people who have brain disorders," said Jeanne Toovell, a Mahopac woman who has an adult son with a mental illness. "It's not a lack of motivation or that they can simply pull themselves up by their bootstraps." Because of coverage limits, the family faced huge hospital and outpatient care bills, said Toovell, co-chairwoman of the Putnam County chapter of the National Alliance for the Mentally Ill, or NAMI, a grass-roots organization representing the mentally ill and their families. Unlike typical health insurance that may require a $10 or $20 co-payment for outpatient care, those seeking outpatient care for mental illnesses usually face a $40 to $50 co-payment and strict limits on hospital stays. Limits on coverage often lead to patients being forced out of hospitals too soon, disrupting progress in their treatment, mental health advocates say. "I've known families whose children have been hospitalized for two weeks and then the insurance ran out. The child wasn't ready and had to go back into the hospital and start all over again," said Ann Loretan, co-president of NAMI's Westchester County chapter. "For some families, this happens a number of times." The benefits of Timothy's Law will not be felt uniformly, though. Exempt is health coverage offered by companies that are self-insured, those that pay for health coverage themselves rather than rely on payments from an insurance company. This type of insurance coverage is regulated by the federal government rather than states. Large companies often provide this type of coverage. Also exempt from the parity requirement are businesses with fewer than 50 employees, though these companies can provide equal mental health benefits if they choose. Small businesses do not escape untouched by Timothy's Law, however, which sets a minimum standard of mental health benefits if these companies provide standard health insurance. The bill also excludes coverage for drug and alcohol addiction, though many of these individuals may be covered if a mental illness also is diagnosed. These exceptions were part of the compromise that led business organizations to drop their opposition to Timothy's Law and paved the way for its passage. That opposition was based on the fear that the requirement to provide expanded mental health benefits would increase business costs. "It is not everything we sought, but it gives us an opportunity to show that the bill is not going to break the bank," said Shelly Nortz, deputy executive director for policy with the Coalition for the Homeless, one of the groups active in negotiating the law. Even though federal law exempts self-insured companies from state requirements such as Timothy's Law, Nortz said many large companies such as IBM voluntarily provide such mental health benefits. The companies find that improved mental health benefits reduce absenteeism and boost overall productivity, Nortz said. Tax
Breaks, Other New Laws Greet New York's New Year The Associated Press ALBANY, N.Y. (AP) — It will be less taxing to be married with children in 2007. New York's tax law is changing Jan. 1 to eliminate the "marriage penalty" by increasing the standard deduction for married couples compared to the exemption provided to two single taxpayers. The move, which has been phased in over several years, is expected to save taxpayers $41 million in 2007 by raising the standard deduction for married couples filing jointly to $15,000, up from the $14,600 they were allowed on their 2006 filing. The change will eliminate disparities between married and single people, tax department officials said. Most taxpayers with children at home will also start to benefit from the Empire State Child Tax Credit, worth about $300 for a taxpayer and saving parents $600 million statewide. The requirements to get the credit reflect its stormy trip through the state Legislature. Gov. George Pataki had proposed a $500 education tax credit for moderate- and low-income families in poorly performing public school districts. It could have been used for tutoring, SAT test preparation, or tuition for religious and other private schools. It would have cost the state $400 million annually and was backed by Catholic, Jewish and Lutheran educators and parents. But that proposal didn't sit well with the Legislature, especially the Democrat-controlled Assembly. Public school advocates and teachers unions objected that the measure could encourage transfers to private and religious schools at a time when public schools need more funding. Months later, it was passed into law as a $330 "child tax credit" for taxpayers with children 4 to 17 years old. There is no mention of education and it will cost the state $200 million more in revenue. "It's going to be helpful to parents, but we don't think it's the best policy that could have been implemented," said Dennis Poust, spokesman for the New York Catholic Conference. "We don't need people buying Nintendo Wiis when they should be paying for their kids' education." The state's minimum wage will rise to $7.15 an hour from $6.75. For those whose wages are complemented by tips, the minimum wage will be $4.60 an hour, up from $4.35. It's the last bump in a 2004 law that phased in the increase over three years. Americans may also see more of New York beginning Jan. 1. That's when a $7 million tax credit "pool" starts to encourage production companies to do radio and television commercials in New York City and throughout the state. Also kicking in on Jan. 1 will be Timothy's Law, which will require insurers to provide more mental health coverage. Although most health insurance companies already provide the care to varying degrees, the law requires offering it to workers even in small businesses. The bill requires insurance companies to cover 30 inpatient and 20 outpatient days of treatment for mental illness. Companies must fully cover "biologically based mental illnesses" including major depression, obsessive compulsive disorder, anorexia and binge eating. Timothy's Law also requires coverage for children with attention deficit disorder, disruptive behavior disorders or disorders that include suicidal symptoms. The state would pay the premium increase for companies with 50 or fewer employees. The measure is expected to increase premiums about 3 percent and no more than 10 percent, while providing a much wider array of mental health services. Because of delays in passing the bill in both houses, the law was signed by Pataki just two weeks ago. So the insurance industry may need more time to adjust to the new mandate, stalling its implementation for a few months, Pataki said at the bill signing.
January 01, 2007 — Among the laws set to take effect in New York on New Year's Day is Timothy's Law, which requires insurers to provide more mental health coverage. Although most health insurance companies already provide the care to varying degrees, the law requires offering it to workers even in small businesses. The bill requires insurance companies to cover 30 inpatient and 20 outpatient days of treatment for mental illnesses, including major depression, obsessive compulsive disorder, anorexia and binge eating. Timothy's Law also requires coverage for children with attention deficit disorder, disruptive behavior disorders or disorders that include suicidal symptoms. The state would pay the premium increase for companies with 50 or fewer employees. The measure is expected to increase premiums about 3% and no more than 10%, while providing a much wider array of mental health services.
Thank you, Governor Pataki, for signing Timothy's Law. Those suffering from mental illnesses will now have access to equal health coverage, thus reducing a common barrier to treatment. This bill also will help alleviate the stigma of mental illness in our society, another such barrier. In addition, this bill will bring hope to the thousands of New Yorkers who have lost a loved one to suicide, survivors like me who know this legislation will help prevent other families from suffering from the same tragic loss. Suicide is a national public health problem that results in the death of one American every 16 minutes (more than 32,000 per year). In New York, deaths by suicide surpass 1,100, according to 2004 statistics. More than 90 percent of suicides are the result of a mental illness, not always treated or diagnosed. We know that there is a great deal more that needs to be accomplished as we work to prevent deaths by suicide, but the passage of Timothy's Law is a huge step forward in this fight. Insurance coverage for mental health care is an essential step. Thanks also is extended to the O'Clair family for their passion, tenacity and leadership. MARY
JEAN COLEMAN
2007
Brings Some N.Y. Legislation that is Easy to Applaud In the spirit of new starts, we share a few pats on the back to the state Legislature and now-former Gov. George Pataki for drafting, passing and signing a host of new laws that took effect yesterday or will do so soon: ACCESSING
HEALTH CARE, WATCHING MEDICAID DOLLARS Timothy's Law, named after an ill upstate 12-year-old who took his life in 2001, mandates better, but still not comprehensive, insurance coverage for people with mental illness. Other health-related laws new to New York include a measure that clarifies the definition of autism spectrum disorders. Why is that important? It will expedite the diagnosis of autism and stop insurance companies from refusing to cover treatment. Another new law provides for increased Medicaid reimbursement rates for the treatment of medically fragile poor children. The Legislature in 2006 also woke up to the extent of Medicaid fraud and waste, even as low-income patients struggle for adequate treatment, and too many small providers can't get reimbursed for providing services. The new Office of Medicaid Inspector General is mandated in 2007 to draw up and put into effect new checks and balances on the system, including efficient ways to resolve payment discrepancies and detect inaccurate billing. MORE
'MINIMUM' MONEY AND SOME TAX RELIEF Married, with or without children, will be a little less taxing. Effective yesterday, the standard deduction for married couples was adjusted to put them on a fiscal par with single taxpayers. Most taxpayers with children at home will also see a new benefit from the Empire State Child Tax Credit, a $330 per-child tax credit, for children aged 4 to 17. Other tax news: There are roughly 130,000 volunteer firefighter and emergency personnel in New York; to encourage more New York residents to join their ranks, the Legislature provided a $200 personal income tax credit for volunteer personnel who are not receiving local property tax exemptions. Taxpayer-supported fire districts, by the way, now will be mandated to hold public meetings on their proposed budgets on the third Tuesday each October. The change should shed more light on what taxpayers are being asked to pay for. PRESERVING,
PROTECTING WELFARE OF CHILDREN Also for children, an increase of $30 million to $60 million has been appropriated to finance construction and renovation of residential programs for children, background checks on prospective foster parents will now be required and there will be a new statewide immunization registry on children to verify they have had required immunizations and to avoid duplicating unneeded ones. Parenting
as Therapy for Child's Mental Disorders In school he was as floppy and good-natured as a puppy, a boy who bear-hugged his friends, who was always in motion, who could fall off his chair repeatedly, as if he had no idea how to use one. But at home, after run-ins with his parents, his exuberance could turn feral. From the exile of his room, Peter Popczynski would throw anything that could be launched -- books, pencils, lamps, clothes, toys -- scarring the walls of the family's brick bungalow, and leaving some items to rattle down the hallway, like flotsam from a storm. The Popczynskis soon received a diagnosis for their son, attention-deficit hyperactivity disorder, or A.D.H.D., and were told that they could turn to a stimulant medication like Ritalin. Doctors have ample evidence that stimulants not only calm children physically but may also improve their school performance, at least for as long as they are on medication. But like most other parents, the couple preferred to avoid drug treatment, if possible. Instead, with the guidance of psychologists at the University of Buffalo, they altered the way they interacted with Peter and his younger brother, Scott. And over the course of a difficult year, they brought about a transformation in their son. He still has days when he gets into trouble, like any other 10-year-old, but he no longer exhibits the level of restless distractibility that earned him a psychiatric diagnosis. ''People are so stressed out, and it's so much easier to say, 'Here, take this pill and go to your room; leave me alone,' '' Lisa Popczynski said on a recent Monday after work. Peter sat on the couch, hunched over his homework, while her husband, Roman, occupied Scott, 8. ''But what I would say is that if you are willing to take on the responsibility of extra parenting, you can make a big difference,'' said Ms. Popczynski, an interior designer. ''I compare parenting to driving. We all learn pretty quickly how to drive a car. But if you have to drive a Mack truck, you're going to need some training.'' In recent decades, psychiatry has come to understand mental disorders as a matter of biology, of brain abnormalities rooted in genetic variation. This consensus helped discredit theories from the 1960s that blamed the parents -- usually the mother -- for problems like neurosis, schizophrenia and autism. By defining mental disorders as primarily problems of brain chemicals, the emphasis on biology also led to an increasing dependence on psychiatric drugs, especially those that entered the market in the 1980s and 1990s. But the science behind nondrug treatments is getting stronger. And now, some researchers and doctors are looking again at how inconsistent, overly permissive or uncertain child-rearing styles might worsen children's problems, and how certain therapies might help resolve those problems, in combination with drug therapy or without drugs. The psychotherapy techniques intended for the improvement of interactions between parents and children have been used mostly for children who suffer from attention disorders or who exhibit aggressive or defiant behavior. But recently, mental health professionals have been studying their use for families whose children suffer from depression or other mood problems. In a comprehensive review, the American Psychological Association urged in August that for childhood mental disorders, ''in most cases,'' nondrug treatment ''be considered first,'' including techniques that focus on parents' skills, as well as enlisting teachers' help. And in its just-completed guidelines, even the American Academy of Child and Adolescent Psychiatry, an organization whose members strongly favor drug treatment, recommends that children receive some form of talk therapy before being given drugs for moderate depression, a very common complaint. ''We are at a point where families who bring in a child ought to get a Chinese menu of treatments that are backed by some evidence, including not only medication but psychosocial or family interventions,'' said Dr. John March, a child psychiatrist at Duke University. ''Not to do so when we know some of these therapies work is, in my opinion, simply unethical. Then let the family choose which one they want.'' The argument over which is better, medication or psychotherapy intended to change the behavior of parents and children, is irrelevant in many cases. A child paralyzed by feelings of severe despair or anxiety, for example, often cannot begin to engage in any type of therapy without a period on medication to break the disabling mood. And many studies suggest that the combination of medication and talk therapy is significantly more effective, and safer, than either alone. DRUGS,
THERAPY OR BOTH? The Popczynskis found that a brand of family therapy by itself was sufficient to put Peter on track at school and at home. Their experience helps illustrate how a family can, in effect, treat a child's psychiatric disorder -- and for whom such an approach can be practical. One thing the family had going for it was location. When Peter's mother began scouring the Internet for resources in the spring of 2003, she quickly learned that they lived only a few miles from the University of Buffalo, which runs one of the country's most comprehensive behavioral modification programs. In a study involving 128 families, psychologists at the university had found that about a third of parents who completed the program saw enough improvement in their children that they had decided that medication was unnecessary. The other two-thirds put their children on stimulant medication at school but at doses significantly lower those typically prescribed, said William Pelham, a psychologist who is director of the Center for Children and Families at Buffalo and the senior author of the study. Eighty percent of the families who participated in the program, with follow-up parent training, decided that their children did not need medication at home. ''Most parents seeking help for a child with a psychiatric disorder never hear about programs like this,'' Dr. Pelham said. ''The only option they're given is medication. Now, it may be that the best treatment for that child is medication. But how do you know if you never try anything else?'' Behavior modification for A.D.H.D. and for related problems, like habitually disruptive or defiant behavior, is based on a straightforward system of rewards and consequences. Parents reward every good or cooperative act they see: small things, like simply paying attention for a few moments, earn an ''attaboy.'' Completing homework without complaint might earn time on a Gameboy. Parents remove privileges, like television and playtime, or impose a ''time out,'' in response to defiance and other misbehavior. And they learn to ignore annoying but harmless attempts to win attention, like making weird noises, tapping or acting like a baby. TRACKING
BEHAVIOR Bluntness, for example, is a virtue. Saying to a child, ''Would you put your toys back in the box, please?'' turns a command into a question. Saying, ''Let's put your toys back in the box,'' implies collaboration. An unadorned ''Put your toys back in the box'' is clearer for everyone, psychologists say, especially so for a child who is highly distractible. However it is dressed up, family therapy like this teaches parents to provide what many critics say children these days are missing -- discipline. But therapists make a careful distinction between corrective action and cruelty, between firmness and frostiness. Overly punitive parents increase the likelihood that a child will develop mood problems, some studies suggest. So parents learn not to become scolds, but to bring their children into line without demeaning them. In some programs, parents play-act situations in front of their peers, who critique the performance for emotional tone and the clarity of parents' statements. As a result, the parents say, they become immediately more deliberate at home. ''You end up constantly saying things like, 'That's not an appropriate behavior,' using this unnatural language,'' said Ms. Popczynski. ''But the point is you don't get into it with them. The first thing I noticed was that I wasn't yelling all the time. The house got a lot quieter right away.'' Their instructions to Peter and Scott became more precise, as well. Saying ''Clean your room'' is too vague and covers a half-dozen tasks, Roman Popczynski, the boys' father, said. Peter might wonder where to start, or just decide it was too much to worry about, and give up, his father said. ''Put your laundry in the hamper'' is much more likely to get results, he said, and lead to the next clear step, like ''Put your toys where they belong.'' Multiple commands are also confounding: ''Put away your crayons, clear away the table, and organize your homework, please'' leaves a child wondering which to do first, and whether it is too much work to finish. ''It overloads a kid, and then he feels like he's failing, which only makes it worse,'' said Mr. Popczynski, who is a UPS driver. STARTING
SLOWLY For instance, at the beginning, Peter, then 7, would get a check mark every time he ignored more than two commands to do his homework, put away his toys or brush his teeth, but he would earn immediate praise if he got started. He received check marks when he slid off his chair at dinner, and earned approval if he stayed seated. At bedtime he accumulated marks if he pulled delay tactics. A tantrum resulted in instant punishment: a timeout of 5 to 10 minutes, shortened for good behavior. The report card was posted on the refrigerator. The Popczynskis started slowly. They measured how many marks Peter recorded in a normal day, and at first rewarded him if he reduced the number by even one: with an extra 15 minutes on Game Cube, for example. If he had more good days than bad ones over the course of a week, he got to choose from a bag of toys from the $1 store. Mr. and Ms. Popczynski continued to raise the standard, one checkmark at a time, until Peter hit zero consistently. ''You want them to be able to succeed,'' Mr. Popczynski said. ''If you make it too hard, they'll just give up, and so will you.'' The Buffalo program is more comprehensive than most: psychologists run a summer camp here, employing the same principles, and, during the school year, regularly visit the teachers of every child in the program. Those teachers who agree to cooperate -- most do -- keep daily behavior report cards for the child too, in effect providing full coverage for a child's every waking hour. Even then, the therapy is far from a silver bullet or an automatic replacement for treatment with Ritalin or other drugs that are routinely prescribed for attention disorder based on many studies showing their effectiveness. The constant tallying and reminding is too exhausting for some parents, especially those raising children on their own and juggling outside jobs. The Popczynskis did well in part because Peter's difficulties were not severe, he was a capable student and his most disruptive behavior came out at home, Mr. Popczynski said. And the couple were able to share the many duties. Yet most parents in the program have found that their children do best with a combination of the medication and family treatment, albeit with significantly lower doses of the drugs than typically prescribed. Dawn Van de Wal, a single mother of three in Buffalo, said that over the last six months she has learned to contain and redirect the behavior of her exuberant 9-year-old, TJ, who has received a diagnosis of attention-deficit disorder. TJ can still become extremely frustrated when required to sit for long periods and concentrate on schoolwork, in the absence of his mother. ''I still give him medication for school, because the fact is that right now he needs it to get through the day, but it's a low dose,'' Ms. Van de Wal said while TJ practiced headstands on the couch. ''He doesn't take it at home, though, and I plan to reduce the dosage in time as much as I can.'' She added, ''I don't want him to look back and think the successes he's had are all due to a drug.'' In surveys and in dozens of interviews, most parents of children with psychiatric diagnoses say that they prefer to avoid using medications, if possible. It is not so easy to do. Insurers as a rule do not fully cover behavior modification therapies because they cost substantially more than drugs. The therapies require an enormous commitment from already overloaded parents, and some children are too severely troubled to respond. Many clinics do not even offer the programs. Psychiatrists, pediatricians and family doctors also tend to be more comfortable writing prescriptions for psychological reasons. SHIFTING
PERCEPTIONS Yet the increasing number of studies that support family-based behavioral treatment is shifting perceptions. The largest study comparing medication with behavioral modification therapy for attention deficit problems, released in 1999, found that drugs were more effective in improving children's ability to focus and keep still. But more than three-fourths of those treated without medication did well enough that their parents were able to keep them off drugs. And behavior therapy significantly improved children's reading performance and their relations with parents and teachers when combined with medication, the study found. Researchers have also studied a different approach to behavior treatment, called cognitive behavior therapy. This approach engages children directly, and signs up parents as helpers. The children meet in groups to speak with a therapist, and learn elementary ways to identify and manage their anger, frustration and hopelessness. The parents learn in sessions how to reinforce those lessons at home. Studies find that up to three quarters of children who suffer from depression, anxiety or obsessive-compulsive disorder find relief of their symptoms with the help of this kind of therapy, which usually involves once-a-week sessions for a few months or so. Alicia Brzycki, a freelance editor who lives in Lawrenceville, N.J., said she noticed several years ago that her son was struggling more than usual with Tourette's syndrome, a neurological disorder that causes involuntary facial tics and limb movements. The condition did not stop him from making friends or doing well in school, Ms. Brzycki said, ''but I think it was first grade, I realized that he was stifling the tics at school, and it created this boomerang effect, and they came out like mad at home.'' At the urging of a doctor, she took the boy, by then 9, to a program at Temple University in Philadelphia that specializes in treating childhood anxiety, which can exacerbate Tourette's. Therapists teach children to identify the thoughts that amplify their worries, and then defuse or moderate them. Ms. Brzycki and her husband attended sessions, too, and Ms. Brzycki learned she was unwittingly contributing to her son's anxiety. ''The main thing that came out for me was that I was being overprotective,'' she said. She added: ''As a parent you want to protect a child from stressful situations, but by doing that you're creating an avoidance mechanism that can turn a minuscule anxiety into the big, bad wolf. I had to loosen my grip'' and let him face his fears. Now in fourth grade, her son has helped make a DVD about Tourette's syndrome that he has shown to classmates. He has a close circle of friends, his mother said, and his tics seem to have diminished lately. But he sometimes still feels self-conscious and will talk himself through it, with his parents' help if needed. Family-based therapy for a difficult childhood disorder is in almost all cases a way of life, not a weeks-long or months-long cure. If parents are serious about finding alternatives to drug treatments, experts say, they have to be willing to make difficult, and long lasting, changes to their behavior and the home environment, and to allow the child to progress at his or her own pace. ''You can't let your foot off the accelerator with something like behavioral modification for A.D.H.D., for example,'' said Dr. Gabrielle Carlson, director of child and adolescent psychiatry at Stony Brook University School of Medicine, who used the treatment for her own son. ''It's like making changes in diet and exercise to lose weight: you don't lose 20 pounds and then you're home free and can eat ice cream and cake again. No, it's a complete lifestyle change, and when you have a child with any of these psychiatric difficulties you have to stay on the program, for as long as it takes.'' TROUBLED
CHILDREN Resources and previous articles are online at nytimes.com/children. Correction:
December 23, 2006, Saturday A front-page article yesterday about
parents' influence in helping their children overcome psychiatric
disorders misstated the age of TJ Van de Wal, whose attention problems
have improved in response to parental techniques. He is 7, not 9. |
||||
 |
||||
