The California Autism Reporttm A Supplement of the Schafer Autism Report CHECK OUT AUTISM CALENDAR UPDATE NOW 200 LISTINGS! http://home.doitnow.com/~events TheMessage 1 of 1 , Dec 2 1:18 AMView SourceThe California Autism ReporttmA Supplement of the Schafer Autism Report
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The Autism Flag of Hope
Monday, December 01, 2003 Editor: Debbie Hosseini hosseini58@... Vol. 7 No. 238.2
CANCELLEDRally and protest scheduled for Wednesday in Sacramento will be postponed until hearing dates are rescheduled! (possibly next week) More Details Later.
Hearing in Sacramento on Co-pay for Services Tomorrow Still On
M.I.N.D. Institute 2004 Distinguished Lecturer Series: Ursula Bellugi
IMPORTANTCome to a Hearing in Sacramento on Co-pay for Services (tax increase).Or say "good bye" to Regional Center services you cannot affordto pay out of the family budgetThe Department of Developmental Services has scheduled a public meeting to discuss and hear comments on putting together a specific plan to implement an enrollment fee and/or a parental co-payment system for children who live at home, between the ages of 3 and 17 who receive regional center services. This will hit families with autism the hardest because we use so much in early intervention services.The Department of Developmental Services was required by legislation tied to the 2003-2004 budget to consult and receive input from those persons or organizations that may be effected by the new law that will require either a system of enrollment fees and/or parental co-payments for regional center services.
The meeting is going to be in Sacramento from 10:00 - 3:00 pm on December 2, Tuesday, in Office Building 9 (Twin Tower), Auditorium, Room 102, 744 P Street.
If you can attend this meeting, here are some of the items worth citing in a presentation.
* The number of people legitimately excluded by the proposed criteria would be minimal, creating a situation in which any cost savings through service reductions would likely to more than offset by spending on eligibility assessments and appeals.
* Regional center eligibility and service denials -- both unjustified ones and those which would be warranted under the proposed new standards -- would result in increased costs to other "systems." People with "high functioning autism" or "mild mental retardation" would more often wind up in the mental health system and the juvenile and adult criminal justice systems, most likely outweighing any savings to regional center budgets as well as resulting in enormous suffering to these individuals and their families. Already these systems are heavily occupied by individuals in the "borderline" range who barely fail to qualify for regional center services, but cannot navigate successfully in a complex society with a fragmented safety net. Moving the eligibility boundary "downward" would force more severely impaired people into that same limbo, where "services" are often fragmented and inadequate until major social rules are violated, at which point coercive, punitive approaches are swiftly imposed.
* The proposed standard invites bureaucratic decision makers to substitute their own impressions regarding level of functioning for clinical determinations. Professionals in regional centers make very clear that they function under considerable political pressures. To extend those pressures from treatment recommendations to eligibility determinations would compound the problem.
* Tightening eligibility would require vastly expanded regional center bureaucracies, increasing the imbalance between purchase of services that benefits consumers and operations budgets, and would aggravate the problem that regional centers devote resources to gate keeping more than to locating, developing and coordinating resources.
* Either regional center team decisions regarding eligibility would remain appealable, in which case there would be lots of appeals and lots of diversion of resources to the appeals process, or they would be made non-appealable, in which there might be constitutional difficulties and there would certainly be a huge amount of anger generated as well as room being created for favoritism and retaliation. Already parents are afraid to challenge regional centers: imagine what would happen if doing so created a substantial risk that developmentally disabled siblings would be denied eligibility altogether.
* Regional center staff are moving under the emergency regulations to limit eligibility for individuals with autism, mild mental retardation, and. fifth category eligibility (which is available for persons with conditions such as traumatic brain injuries which are similar to mental retardation or which. require services similar to those required by individuals with mental retardation). Indeed, in order to have any significant impact either on caseloads or on POS budgets, it would be necessary to target these categories. The problem is that those disabilities require, by definition, substantial handicaps in three domains. Individuals who perform poorly on IQ tests, but do adequately in real life activities, are by definition not mentally retarded. Almost all people with autistic disorder, Asperger's syndrome, and pervasive developmental disorder not otherwise specified have serious difficulties in at least three of the specified domains: receptive and expressive language (at least pragmatics), self-direction, and capacity for independent living, and in most cases self-care, learning, and economic self-sufficiency are affected as well.
* For individuals with historically qualifying conditions who routinely do well in many activities of daily life, such that it would be difficult or impossible to observe recurring impairments in three domains, recognizing regional center eligibility would not create costly service entitlements, as service entitlements are based on needs. What generally high-functioning individuals would lose is mainly two things: the service coordination aspect of the regional center system and crisis management services. Many people who currently function well would not, without this help. In family, medical, behavioral, or financial crises, there would be no agency charged with assisting these people in maintaining the modest supports they need to live productively and safely. For some people, relatives would take up the slack. Others would not receive support, and would fall into "systems" designed for people who are homeless, who commit crimes, or who require inpatient mental health services.
* The proposed regulations would create a crisis-driven, reactive, revolving door system of support for individuals with life-long disabilities, an approach which would be costly in both financial and human terms. Preschoolers with autism may be excluded from regional center services because learning and social expectations for their age are considered modest; as a result, they would lose the services they need to do well in the long term. In discussing the new eligibility criteria with regional center staff, I am finding a frank acknowledgment that people with autism who may not qualify for regional center services during the preschool and early primary years, because social and learning expectations are considered modest (especially by people with limited understanding of typical development), may well re-qualify when skill gaps or behavioral deficits become more glaring. In other words, the emergency and proposed regulation sets up a system which precludes early intervention -- when assistance is most effective as well as cost-effective -- and forces individuals whose disabilities follow a well known lifelong trajectory to leave the system at age three, and then come back after their behaviors have gotten worse and skill gaps have gotten larger.
* The proposed regulations would create perverse incentives, discouraging families from using private resources in ways which could mitigate the impact, and thus the visibility of, handicapping conditions. Already parents of children with disabilities and others in a position to provide material, emotional and logistical support face a difficult dilemma: if they fund supports privately, the resulting progress reduces the apparent "needs" to which public agencies respond, jeopardizing funding both in the short and long term. Letting a loved one deteriorate will help in securing services, but may have serious impact on the individual and family. Families must consider a variety of factors in resolving such dilemmas: the cost of needed services, how long they can afford to fund needed services privately, and how. confident they are that public resources will be available if they exhaust private funds in order to take advantage of windows of opportunity for early intervention. At this point, parents -- and often extended family members and even sometimes family friends and employers -- tend to concentrate resources on early intervention.There is abundant literature making clear that by doing so, they are benefitting society as well as themselves. The new regulations threaten to introduce a severely perverse incentive: if early intervention makes a child "look better," but does not "cure" the underlying disability, then the result of early progress may be long-term, perhaps permanent denial of services. Parents will have to think long and hard before acquiring beneficial services at their own expense, and before placing their children in inclusive environments where the goal is to help them act more "typical." Parents of adults with developmental disabilities will have to consider the risk that their own supports will create a situation in which at their death, the son or daughter will be deprived of needed help because of an apparent high level of functioning to date.* * *
* The course taken by many families -- waiting and seeing whether regional center services are needed rather than accessing them at the first possible time -- will become irrational. At this point, parents often resist qualifying labels for young children, hoping to avoid negative expectations, and believing that if the person needs services, they can be accessed later. Many adults never seek to access the regional center system until family supports abruptly collapse. If the effect of living without supports is that one will be deemed not to have needed them, there will be a strong incentive to tap resources as early and as consistently as possible. Again, this is a perverse incentive problem: private supports would be discouraged, and reliance on public resources would be increased.
[By Maureen Graves, Attorney at Law, maureengraves@....ANNOUNCEMENT
M.I.N.D. Institute 2004 Distinguished Lecturer Series
Bellugi is professor and director of the Laboratory of Cognitive Neurosciences at The Salk Institute for Biological Studies in San Diego, California. She is an expert on Williams Syndrome and is recognized internationally for her scientific contributions to understanding the biological foundations and genetic bases of language and other cognitive functions.
Speaker: Ursula Bellugi, Ed.D.
Time: 4:00 PM
Topic: Neurobiology of Language Development
Time: 6:30 PM
Topic: Genes and Human Behavior: Perspectives from Williams Syndrome
Location: M.I.N.D. Institute Auditorium, 2825 50th Street, Sacramento, CA.
For additional information about these presentations, please see the Institute's web site at www.mindinstitute.org, or call (916) 703-0285.
Editor: Debbie Hosseini hosseini58@...
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