September 2005 NACBHDD Newsletter
The monthly newsletter for the National Association of County Behavioral Health and Developmental Disabilities Directors
In this Issue...
The 2005 NACBHDD Newsletter series is brought to you by:
Medicaid Update: 2006 Budget Process, Katrina, and the Status of Medicaid
Prior to Hurricane Katrina, Congress was preparing to move forward with the reconciliation process and Medicaid reform as part of the 2006 budget process - by September 15. Katrina and related recovery efforts have delayed this process until October 26. While NACBHD had hoped that Medicaid reform might be postponed in light of Katrina, members should note that Medicaid reform and identification of the $10 billion in Medicaid savings remain viable options as for policymakers in DC. For the latest information on the 2006 budget process, Katrina recovery, and Medicaid, including Medicaid reform proposals supported by NACBHD and NACBHD's joint advocacy efforts with other organizations, see the 9/26/05 Washington, DC Update. dcupdate92605.doc And, while there was some anticipation that there might be additional appropriations in light of Katrina, the emphasis is now back on protection of current services (case management and rehab). For more information on this, see the Medicaid Republican Study Committee Document recently distributed to members.
NACBHD Survey: Members Urged to Convey Needs to Congress Now
In light of recent events, the need for NACBHD members to complete the recently distributed (September 1) survey is more urgent than ever. Only 55 of 1100 survey requests have been returned. There are a multitude of organizations and associations in DC all vying for the attention of the Administration and Congress, especially during the next few months as Congress deals with the Katrina crisis and as they take up consideration of large cuts to the Medicaid program again in October, including cuts to rehab and case management. NACBHD needs this survey information to make clear the impact that Medicaid cuts will have in communities.
It is critical that members contribute to this important information source on local behavioral health. Not only is the survey a requirement of the SAMHSA grant referred to in the reprinted email below, it will provide crucial information regarding local behavioral health needs and issues, and, ultimately, will allow NACBHD to move forward as we deal with issues important to the membership in the national arena. A recent email from President and CEO Melissa Staats explaining the importance of the survey and related information, including an online link, is reprinted below.
In March 2005, NACBHD began to implement a grant it received from SAMHSA. The overall purpose of this grant is to obtain a better understanding of the public behavioral health and developmental disability systems at the county, city and regional levels. This is important as the federal and state governments articulate a vision of transformation; for the most part they articulate this vision without the clearest picture of what the NACBHD membership does to ensure the provision of quality services. Part of creating this picture is the completion of this survey.
I urge you to participate in this survey. NACBHD is conducting this survey to document the critical role of county/city government and other behavioral health authorities in the public behavioral health and developmental disability services systems (e.g. planner, payer, manager). This will help NACBHD move beyond "anecdotal" to real data that will be hard to dispute. By documenting what you do, NACBHD will increase the legitimacy it brings to legislative initiatives and policy-making-especially Medicaid. Therefore, your participation is critical.
Please contact Melissa Staats at mstaats@nacbhd.org, if you need access to the survey.
Hurricane Katrina: Resources and Information from HHS
On September 21, NACBHD participated in the Katrina Mental Health and Substance Abuse Call with SAMHSA Administrator Charles Curie. Members may access the information from that call through this newsletter article. For Mr. Curie's comments during the call, including the SAMHSA mission for working with state, local, and federal partners for relief and recovery efforts, click here. For the HHS Critical Infrastructure Data Request, needed from states involved in the relief efforts, click here. For the letter to state Medicaid directors and SCHIP directors regarding a new section 1115 demonstration initiative, click here.
Update on the Campaign for Mental Health Reform
The Campaign for Mental Health Reform, of which NACBHD is a partner, has been extremely busy over the last month, both due to pending activity around Medicaid in Congress and due to needs for emergency assistance brought on by Hurricane Katrina. The Campaign continues to advocate for concerns related to Medicaid, particularly around proposed amendments to Medicaid's Rehabilitation and Targeted Case Management options. See the Campaign Web site at www.mhreform.org for the most recent information and action around these issues, including the Campaign's September 14 letter to Congress urging emergency assistance for Hurricane Katrina victims and first responders and the Campaign's September 2 letter to Congress opposing Medicaid cuts. The newsletter will keep members updated about the Campaign's efforts in detail, especially as Congressional activity around Medicaid moves forward over the next few months.
NACBHD Membership Campaign Is Underway
The membership campaign materials for 2006 have been mailed to all NACBHD members and potential members in NACBHD member states. Unfortunately, as members may have noted from a September 22 email, the materials included an invoice dated 2005, which is an error. A 2006 invoice was included with the September 22 email. If you need a hard copy of the 2006 invoice, or have any questions, please contact the NACBHD office at (202) 661-8816 or at mgilmore@nacbhd.org . NACBHD apologizes for any confusion this may have caused.
Annual Conference: "Transformation, Recovery, & Self-Determination" Mark Your Calendars for October 20-22
The NACBHD Annual Meeting will take place October 20-22 in Portland, Oregon. The theme for this year's conference is "County Government and County-Sponsored Authorities Leading Transformation, Recovery, & Self-Determination." Consumers, county authorities, and staff from national advocacy organizations will lead discussions on issues critical to transformation to a recovery-based system. Please take a moment to mark this important event on your calendar, and check the website for more information and to register online.
And, NACBHD is pleased to announce that officials from the Centers for Medicare and Medicaid Services (CMS) have already agreed to present the most up-to-date information on the MMA implementation at the Annual Conference. This is especially timely as beneficiary enrollment begins November 15, and official implementation is January 1. (See the article on Medicare for more details on implementation of the MMA.) Please continue to visit the CMS website for updates on MMA implementation www.cms.hhs.gov.
Network of Care: NACBHD and Trilogy Harness the Internet to Promote Recovery
NACBHD, in its continuing partnership with Trilogy Integrated Resources LLC, is working to develop a means of providing members with the best and most up-to-date information regarding mental health recovery. Trilogy is in the developmental stages of creating a prototype Recovery Channel on its existing Network of Care Web site that will focus solely on recovery issues. Initially, the Recovery Channel will focus on mental health recovery, but it later will be expanded to include a separate section focusing solely on addiction recovery.
NACBHD will work in collaboration with the National Association of State Mental Health Program Directors (NASMHPD) to expand the existing Network of Care Web site to incorporate this latest innovation. The collaborative is part of NACBHD's overall commitment to assist in the transformation of the public mental health system recommended in the Final Report of the President's New Freedom Commission on Mental Health. The Recovery Channel will represent an unprecedented compendium of the most current information, trends, and tools related to recovery.
The NACBHD/NASMHPD collaborative is in the process of formulating an advisory group comprised of members of the two organizations, along with a number of direct consumers, to advise Trilogy regarding content areas and formatting of the Recovery Channel. Content areas that are under consideration may include the following:
Network of Care Expanding Both Content Areas and Target Populations
"One of the most exciting things about Trilogy and the Network of Care is their willingness to continue to seek new ways of providing additional content and services to public mental health, substance abuse, and developmental disability authorities," said Robert Egnew, NACBHD liaison to Trilogy. "I have been very impressed with Trilogy's interest in identifying new means of serving their customers. They clearly recognize that information is the key to empowerment and self-determination and want to provide information to consumers, families, and the general public in the most user-friendly format possible. The Recovery Channel is an excellent example of their commitment, and it will be provided to all new and existing Network of Care sites at no additional cost," he added.
Stand-Alone Substance Abuse and MR/DD Sites Under Construction
Trilogy is in the process of developing stand-alone Network of Care Web sites for both substance abuse treatment authorities and for authorities providing mental retardation/ developmental disability services. Trilogy is working with NACBHD to reach out to local, state, and national organizations to enlist their input regarding the content and materials to be provided on these two new Web sites.
For More Information
For more information regarding the Network of Care, please contact Robert Egnew at
regnew@nacbhd.org or visit the Network of Care Web site at
www.networkofcare.org. You may contact Trilogy Integrated Resources at
www.trilogyir.com.
The Meth Crisis: A Preliminary Look at a 2006 NACBHD Priority
The National Association of Counties (NACo), of which NACBHD is an affiliate, recently announced the formulation of a Meth Action Group to address the methamphetamine epidemic in communities. Twenty-three county officials will address issues related to the problem in an effort to promote communication among federal, state, and local officials and the private sector. The Meth Action Group's first meeting was held September 27. For more information on the Meth Action Group and NACo's meth initiative, and to access surveys showing the growing problem in counties around the country see www.naco.org.
In addition, NACBHD has made the methamphetamine epidemic a priority in its work plan for the coming year. As NACBHD begins to address the crisis and formulate a policy, Substance Abuse Committee Chair Karen Scherra (Executive Director, Clermont, Ohio MH&R Board), Patrick Fleming, Director, Salt Lake County Division of Substance Abuse Services, a NACBHD member and member of the NACo Meth Action Group, and NACBHD Executive Director Melissa Staats recently held a conference call to discuss the issues facing the Meth Action Group and how NACBHD might represent county behavioral health interests as NACBHD forms a policy around meth. These issues will be important to the NACBHD work plan.
Meth may not appear to be a problem in some areas; prevention and treatment may not be a focus
Meth may not appear to have as much impact in some states as it does in others. Both Scherra and Fleming noted that there is a focus in various areas nationally on closing down labs and punishment. While there may have been instances where labs were shut down amid significant publicity, very few new people have filtered into the treatment system. Those involved with the labs may have moved on to other locations.
There may be the impression that there is nothing going on with meth in some counties because meth labs are easy to disguise. Treatment may not be a priority; the focus may be on shutting down labs and getting children away from "bad" parents. There may be a need in some areas to counter-balance the negative publicity around meth users.
Fleming noted that meth appears to be a drug of white lower socioeconomic America. Rural America can now make its own meth, and meth is also produced in big factories in Mexico and the Orient. The meth from Mexico is much more potent - it is about 90% pure.
Meth is the preferred drug among Salt Lake County drug using women, and most of the women using meth have children. Many of these women have marginal vocational skills, no high school degree, and they have one or two children early in life. As Fleming characterizes it, "They are chained to a life of poverty." The men they may be living with likely encourage them to party and use meth. In addition, women may find meth attractive because they find they don't gain weight when using it. There is an additional public health concern - meth is associated with the spread of sexually transmitted diseases, hepatitis C, and HIV.
Cost-effectiveness of treatment
Fleming says that in Utah it costs $100,000 to incarcerate a mother with two children who has been involved with meth (including $32,000 to place her children in foster care), while a treatment program for her costs $15,000 to $18,000 per admission for 90-180 days of treatment. Local elected officials need to know that incarceration falls to counties as a cost; prevention and treatment is a federal match rate. The group thought it is notable that large restrictions in Medicaid are being considered at the same time the meth crisis is escalating, and many of the women involved with meth have no other insurance and rely solely on Medicaid.
Fleming said that the cost-effectiveness of treatment for meth users vs. incarceration is a message that "We need to get out there." There was discussion that while meth production and use is breaking the law, they are part of a chronic disease. Treatment resources and money are needed on the front end. The prevention message is important too, with an emphasis needed on the cost-effectiveness of both prevention and treatment.
NACBHD's meth policy is evolving
Scherra says the meth crisis is a clear focus for the Board and the Substance Abuse Committee, and that there are issues to be grappled with while NACBHD forms a policy around the crisis. If members are interested in discussing meth issues or joining the Substance Abuse Committee, they may contact Karen Scherra at kscherra@ccmhrb.org or Melissa Staats at mstaats@nacbhd.org.
The newsletter will continue to follow the meth crisis as NACBHD formulates a policy and as the NACo Meth Action Group progresses with its work.
For two news releases from SAMHSA related to the prevalence of meth and meth and treatment, see below.
2004 Survey Found More Meth Users Meet Dependence and Abuse Criteria
From a September 22 press release:
SAMHSA released data showing that the prevalence of methamphetamine use in 2004 was similar to the number of users in the prior two years. But, the new 2004 National Survey on Drug Use and Health also showed that the number of past month methamphetamine users who met criteria for illicit drug dependence or abuse in the past 12 months increased sharply. In 2004, 1.4 million persons ages 12 or older (0.6 percent of the population) used methamphetamine in the past year and 600,000 (0.2 percent) used in the past month. These numbers are similar to numbers in 2002 and 2003. However, the number of past month methamphetamine users who met criteria for illicit drug dependence or abuse in the past 12 months increased from 164,000 (27.5 percent of past month methamphetamine users in 2002 to 346,000 (59.3 percent) in 2004. Of these 130,000 (22.3 percent) had stimulants, primarily methamphetamine, as their primary substance of abuse in 2004."Methamphetamine is undeniably a uniquely destructive drug," SAMHSA Administrator Charles Curie said. "While rates of use have remained relatively stable over the past few years, these new findings show that an increasing proportion of methamphetamine users are developing problems of drug abuse and dependence and are in need of treatment."
The survey questions ask about both illicit methamphetamine, as well as prescription methamphetamine used nonmedically. Dependence or abuse is defined using criteria specified in the DSM-IV. Information on symptoms of dependence and abuse is collected for alcohol and a number of specific illicit drug categories, including stimulants, but not exclusively methamphetamine. Methamphetamine is the most frequently reported stimulant used. The survey found that in 2004 there were an estimated 318,000 new initiates to methamphetamine use, defined as having used it for the first time in the 12 months prior to the survey. This is approximately the same number of new users in 2002 and 2003. The data ranked 12 states in the West, including Nevada, Wyoming and Montana, among states with the highest past year use of methamphetamine. Connecticut, New York and North Carolina were among the states with the lowest rates. The rate of use was higher in counties in small metropolitan areas and counties not in metropolitan areas than in counties in large metropolitan areas.
The National Survey on Drug Use and Health is an annual survey of close to 70,000 people. The survey collects information from residents of households, residents of non-institutionalized group quarters and civilians living on military bases. The report is available on the web at www.oas.samhsa.gov.
HHS Announces Rural Methamphetamine Awards
From an August 18 HHS press release:
HHS AWARDS $16.2 MILLION FOR METHAMPHETAMINE ABUSE TREATMENT
HHS Secretary Mike Leavitt recently announced 11 new, three-year grants to provide treatment for methamphetamine abuse and other emerging drugs for adults residing in rural communities. The grants, awarded by HHS' SAMHSA, total $5.4 million for the first year and approximately $16.2 million for all three years.
These new grants, and the six grants awarded in 2004 through this program, support treatment in rural areas that have been particularly hard hit by methamphetamine abuse. While the prevalence of methamphetamine use is about the same, the number of persons seeking treatment for methamphetamine abuse has increased dramatically, 10 percent between 2002 and 2003 alone, continuing a trend seen since 1993. Arkansas, California, Hawaii, Idaho, Nevada, Oklahoma and Utah had more than 20 percent of their admissions to treatment due to methamphetamine abuse, and Iowa's rate is just over 19 percent.
In comparison, methamphetamines/amphetamines account for 7.4 percent of substance abuse treatment admissions nationally. Heroin accounts for 14.8 percent of treatment admissions, cocaine accounts for 13.6 percent, and marijuana accounts for 15.5 percent.
"Methamphetamine abuse causes great harm to children, families and communities, but it is a preventable and treatable problem that we are taking steps to address," Secretary Leavitt said. "The President's comprehensive approach, combining prevention, treatment, law enforcement and education is the most effective approach to reducing the public health threat of methamphetamine. These new grants are one part of our overall efforts to help state and local officials identify and address new and emerging trends in substance abuse."
"The ravages of methamphetamine abuse are being seen in communities across the country," SAMHSA Administrator Charles Cure said. "Fortunately, we know more today than ever before about what works in prevention, education, and treatment. We know now that methamphetamine abuse can be successfully treated. Results of SAMHSA-funded studies show 59-69 percent of those who have been treated are free of methamphetamine after six months."
Counties in California, Georgia, Montana, New Mexico, Oregon, Tennessee, and Texas were awarded grants. For the complete list and descriptions of the programs, see the news releases section of the SAMHSA Web site at www.samhsa.gov, "HHS Awards $16.2 Million for Methamphetamine Abuse Treatment," August 19.
NACBHD Member Wins Harvard Innovations in American Government Award
The Allegheny County State Forensic Program recently won a $100,000 grant from Harvard's Kennedy School of Government to support replication of its approach to working with individuals with behavioral health diagnoses as they are released from Pennsylvania correctional facilities. The award, considered the "Oscars" among government accolades, is part of the Ash Institute for Democratic Governance and Innovation at Harvard's Kennedy School of Government.
Pat Valentine, Deputy Director for Behavioral Health Services and NACBHD member, Allegheny Department of Human Services and Amy Kroll, Director of Forensic Services in the Office of Behavioral Health, have been working on the program since its inception in 1999. The Allegheny County State Forensic Program delivers services to individuals who are ready for release from correctional institutions and their families, and it is the only program that offers a multitude of services for individuals leaving correctional institutions and reintegrating into the community. In addition, it is the only program with personnel who go into the prisons to address the reintegration process before release and to lower the anxiety associated with reintegration into the community. Kroll used to be a correctional officer and says she has seen individuals facing release and reintegration who had to be "literally pulled off the bars" because they did not want to leave and did not know what to expect.
Prgoram services
The program follows individuals into the community for 90 to 120 days, and individuals know that the program is always there for them, say Valentine and Kroll. Program services include: $200 in clothing vouchers, three months of bus passes, help with a security deposit and two to three months rent, making sure medical assistance and social security are activated, as well as taking individuals to medical assistance. Individuals are taken to day labor so that they can "test the waters." Case management is transitioned to managers in the community with one of the provider agencies.
Significant reduced recidivism and cost-effectiveness
Valentine and Kroll say that in addition to the life-changing impact for the individuals involved in the program, the program significantly reduces recidivism and is very cost-effective.
The Pennsylvania Department of Corrections has asked other counties to consider implementing the program, and there is a Pennsylvania governor's reentry task force that will discuss the issue. Kroll will be involved with this effort.
Both Valentine and Kroll say that the program takes a potentially very volatile population and provides them with the needed services for transition, changing a potentially explosive population into productive citizens. For example, they say one woman is now managing a pizza shop and taking care of her five children.
For more information on the program, see www.county.allegheny.pa.us/dhs/CSyst/Adult/Jail/MaxOut.htm.
Autism Spectrum Disorders: "Hot" Issues and the "Explosion" in Diagnosis
NACBHD's Developmental Disabilities Committee has cited Autism Spectrum Disorders (ASD) as an area of growing concern. As county behavioral health authorities continue to confront the issues associated with the diagnostic category commonly referred to as "exploding," NACBHD will address issues of concern in the newsletter. This is the first in a possible series of such articles. For this article, NACBHD spoke with Jim Behrends, Associate Director, Olmsted County Adult & Family Services, Rochester, Minnesota, about concerns related to providing services to individuals with Autism Spectrum Disorders, and to Dr. Sue Ann Kline, Executive Director, the Autism Asperger Resource Center, a separate nonprofit housed at the University of Kansas Medical Center. Another article will follow in the October newsletter. Several areas of concern and common challenges emerged in the conversations.
An "explosion" in diagnosis
Dr. Kline spoke to the increase in diagnosis. Graphs on the incidence are available at
www.fightingautism.org, and Dr. Kline says the incidence for all categories of ASD is growing faster than any other disability category in the country. There has been a 160% increase in Kansas over the last four years as reported by the Kansas State Department of Education, she says. (This figure reflects children of school age.) There is a lot of discrepancy in the numbers; at best they are estimates due to the different diagnostic criteria. And, Dr. Kline says, the incidence of children with developmental disabilities has increased over 1000% over the last 10 years, and some of these probably have autism spectrum disorders.
Autism is the third largest of all childhood diseases, with cancer and diabetes first and second, and the fastest growing developmental disability, with a 10-17% annual growth rate. (Autism Society of America.) A diverse population is affected by ASD; it cuts across cultures and economics. Dr. Kline refers to information from the Autism Society of American (www.autism-society.org) that says that there are one and a half million individuals with ASD disorders now who need support services. (1 in 166 births.) The United States spends $52,000 per minute or $90 billion annually to care for these one and half million children and adults with ASD. And she says, some figures indicate that there are 1.7 million individuals with the affected. There is some research that says 90% of the 1.5 million individuals are under the age of 20. Dr. Kline says, "These problems will explode in the future."
Dr. Kline says it is important to realize that the increase is evident not only in the United States, but all over the world. For example, in Japan and Germany, the incidence has greatly affected the community's ability to treat those with the disorders. The medical and scientific communities can't agree on a cause; and therefore, they splinter in the areas which they support.
The increase is evident at the county level elsewhere. Over the past 18 months, Behrends has been aware of an increase in ASD being diagnosed in Olmsted in Minnesota. He works in all areas of adult services, and he has case workers who work with children and adults.
Arriving at an appropriate diagnosis
Proper diagnosis is a significant concern, and typically occurs in older children and adults because previous diagnoses have failed. Dr. Kline says many children with Asperger's Disorder receive four to five diagnoses before they are correctly diagnosed. Assessments focus on IQ and adaptive behavior, like they do for MR, but they may not accurately reflect this. Dr. Kline explains that the ability level and functioning level of Aspergers are very different. The way this is assessed across the nation varies, and Dr. Kline is not aware of good assessment tools anywhere for Aspergers. DSM and clinical observations are best, but they are still very subjective.
In Kline's office, they always recommend that patients see someone in the area who is a specialist in diagnosing and treating Asperger's. She says there is a waiting list of three to nine months in the Kansas City area. There are 10 such specialists (psychiatrists or psychologists) in the Kansas City area, and some of these specialists may not take new patients because their practices are already full. And, she says, pediatricians, on average, do not have a lot of knowledge of Asperger's. In her resource center, they are trying to improve the knowledge gap by educating clinical psychologists. However, she says one cannot blame the medical and psychological communities for not knowing more; the new incidence is at epidemic proportions, with the need escalating for services.
Access to services
Kline says that while Autism and Asperger's are both in the DSM-IV, there is a difficulty in accessing services with some of the ASD disorders, especially Aspergers. Individuals with Asperger's are often too high functioning to be classified with a developmental disability, but they do have a significant need for all quality of life services. There are behavioral concerns, social concerns, and supervision concerns. Sometimes they need medication; sometimes they need social skills services, but many private insurers don't cover these. Medicaid is doing a little better, but primarily with classic Autism. To complicate things further, children with Asperger's are often dropped off waiting lists because of good adaptive behavior skills.
One-on-one and direct instruction and applied behavior programs are very expensive. Dr. Kline receives numerous calls from parents, and says she hears from them that it can cost $6,000 to $10,000 a month for the extensive programs at home. The public schools can't afford applied behavior analysis. Kline reports that experts and researchers say that children need at least 20 hours of this a week. Some parents pay privately for this to be done on the night or weekend.
Behrends says that, typically, there is intake of services across units because if the client does not meet the intake criteria for one unit, they go to another unit. With Autism, an individual's IQ is usually low enough for the individual to be served by developmental disabilities with waiver services. But with Asperger's, Behrends says there "is 100% no question" that the individual needs services, but that the excluding factors are the county and state eligibility criteria for services. There is a mix of how these individuals are served, some with home and community based care, some with mental health. He has had two or three individuals who they could not figure out how to serve, and eight to ten individuals who are served in various areas, with resources "cobbled together" for them.
Dr. Kline says the increase in diagnosis is characterized as "a state of crisis," and that the increases in the number of individuals with ASD, coupled with the reduction in services, leaves families in a crisis. She believes the Autism population could be effected by the likely $10 billion in cuts to Medicaid. At the time this article went to print, statistics at www.fightingautism.org cited the U.S. annual economic cost of Autism to be $6,041,740,721.
Best practices
Behrends recently did an informal survey of NACBHD members about best practices for Asperger's. He received only a few responses, and assumes this means there is a dearth of best practices. He wonders if other states are responding to the problem like Minnesota.
Behrends talks with providers doing the work and finds that there is no consistency about practices and what are best practices, and nothing to base best practices on. Currently, Behrends is:
Also, there were individuals who were denied services in the past because their symptoms were not severe enough to meet the criteria. He is trying to figure out what has happened to them and how they are doing.
According to Dr. Kline, there is not any one best program or practice for Asperger's. Programs that are individually based on the child's needs are best. She says, "These kids are very different from each other."
Additional challenges of Aspergers
Funding and resources. Behrends says an important issue is determining how to make the case in terms of resources -- at a time when resources are getting leaner and the federal Medicaid picture is grim. They are facing such questions as: How do they make the case for a new area of funding and how do they carve out a new area of eligibility, with Medicaid scrutinized at a higher level? The timing of the Medicaid reform at the federal level is not good, and it is likely that this will impact the Asperger's group. The extreme social issues are what arise in Aspergers, and Autism is better covered in Minnesota.
Treatment challenges. Dr. Kline cites comorbidity with learning disabilities in the Asperger's population, such as dysgraphia, executive functioning, and pragmatic language disabilities. Nonverbal communication is difficult for an individual with Asperger's, and he or she may have difficulty with sarcasm, and problems with friends. He or she may focus on a particular subject, and may have behavior meltdowns from sensory overload. There is a definite need for academic support, social skills instruction, and behavioral therapy and sensory interventions. There is also a need for support with pragmatic language difficulties. This requires a team of therapists, and Dr. Kline says the team approach is the most successful. She says the prognosis for children with Asperger's who don't receive treatment is no better than the prognosis for those with low Autism. Kline characterizes those with Asperger's as children with "such potential who are often classified as underachievers."
Individuals with Asperger's often have a history of being improperly medicated. For example, a clinician may think an individual has ADHD and prescribe a stimulant such as Ritalin, which actually makes the individual worse, when in fact, they may need different medication.
Comorbidity. In addition to the comorbidity with learning disabilities, Dr. Kline says 30% of individuals with Aspergers have comorbid physical conditions such as seizure disorders, depression, food allergies, immune systems issues, and sleep disorders.
Family support
Behrends reported that younger individuals are being served both in home and out of their homes, with the clinical expectation that the family is part of the in home therapy. Beyond that, his program has not had the chance to enter into the issue of family support yet.
However, Dr. Kline says the impact on the families is often forgotten, and that families can often go through a grieving process, with emotional stress related to both the disorder and the financial burden. The divorce rate is higher than for any other disability category. Her resource center is focusing on family support, and as NACBHD spoke with Dr. Kline, she was preparing for a grandparents' support meeting. They have a lot of different support services - individual and group. She says families need some place to process the grief, depression, and anxiety. The additional stress can cause problems for families and can be exacerbated by waiting lists for respite care. There is a waiting list in their area for HCBS in Medicaid.
Research
Dr. Kline was enthusiastic about the current state of research around ASD, especially at the TGen and Southwest Autism Research and Resource Center in Phoenix, where the underlying causes of autism are being investigated, particularly in genetics and families who have one of more relatives with autism. She cites research focusing on people who may have a predisposition to autism but need an environmental exposure for the disorder to occur. However, researchers do not yet know the genetic link or the environmental exposure. It is believed that in 5 to 10 years researchers will have identified a cause and developed "smart" drugs for those with the predisposition who are facing the threat of an ASD. In regard to the question of mercury, Dr. Kline says that the research shows that there is no doubt that this population has a higher level of mercury than other people, but that there are many factors that could cause this.
Hope for the future
Dr. Kline hopes for an increase in the availability of early intervention, which she says can significantly impact the productivity of individuals with ASD. Research at the University of Kansas Medical Center suggests that while there is no cure for autism, wrap-around services can increase the quality of life. The schools in Kansas have infant and toddler programs, but Dr. Kline says they are not quite up to speed yet; research says it costs three times more to educate a child with autism.
Future perspective
Dr. Kline says people have not realized that we are experiencing a growth rate, and that we need funding to match the growth rates. She feels this is just the "tip of the iceberg."
Look for the next article on Autism Spectrum Disorders in the October newsletter. If you have concerns related to this diagnostic category that you would like to see covered in the newsletter, contact Lynn Ferrell, Chair of the DD committee at lynn@pchs.co.polk.ia.us or Melissa Staats at mstaats@nacbhd.org.
National Suicide Prevention Lifeline Connects Individuals to Local Providers
Toll free number operates 24/7 and puts individuals in touch with nearest providers
The National Suicide Prevention Lifeline, 1-800-273-TALK (8255), connects individuals 24 hours a day, seven days a week, to the nearest available suicide prevention and mental health service providers, and it is the only national suicide prevention and intervention telephone resource funded by the federal government, through SAMHSA.
Promotional materials and information downloadable free from Web site
More information about the lifeline, including materials (a toolkit, banners, buttons) that members can access and download free of charge, is available at www.suicidepreventionlifeline.org. Specific information relating to victims of Hurricane Katrina is available on the website as well.
The toolkit is available at http://www.suicidepreventionlifeline.org/campaign/kit/default.aspx.
This kit is organized into three sections:
Members who have questions about the materials or require assistance can contact the Lifeline Communications Team at lifeline@samhsa.hhs.gov or at 1-800-790-2647.
SAMHSA Announcements
From an August 29 SAMHSSA press release:
Proposed Expansion of National Registry of Evidence-Based Programs and Practices Announced in Federal Register
SAMHSA has announced the proposed expansion of the National Registry of Evidence-Based Programs and Practices (NREPP). The announcement was published in the Federal Register dated August 26. NREPP has become a nationally recognized tool that is useful for identifying and promoting effective interventions to prevent substance abuse. The proposed expansion will create a national resource for the latest information on the scientific basis and practicality of interventions to prevent and/or treat mental and substance use disorders. To facilitate review and comment, the Federal Register notice, as well as other supporting documents, is available through the SAMHSA website at www.samhsa.gov. Click on "National Registry of Evidence-Based Programs and Practices FRN" under the "Quick Picks" section on the SAMHSA home page. Written comments can be sent through the U.S. mail to the following address: SAMHSA c/o NREPP Notice, 1 Choke Cherry Road, Rockville, MD 20857 or electronically at nrepp.comments@samhsa.hhs.gov.
Access to Membership Privileges
Members who have not paid their dues will no longer have membership privileges as of October 1.
If you have questions or would like to make arrangements regarding your membership dues, please contact Melissa Staats
at mstaats@nacbhd.org or Maeghan Gilmore at mgilmore@nacbhd.org, or at (202) 661-8816.
