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Mental Advocacy

— In 1969, Assemblyman Frank Lanterman, a Republican from La Cañada, introduced a bill known as the Lanterman Mental Retardation Services Act. Finally passed in 1977, the Lanterman Act drives most of the services for the developmentally disabled in both the public and private sectors and protects their rights. The act was soon followed by the creation of regional centers throughout the state. These centers offer the disabled most of the services mandated by the Lanterman Act (San Diego's regional center is in Kearny Mesa on Ruffin Road). When the disabled are not treated fairly on the job, not provided with the services or amenities mandated by the law, or abused, the regional center or disabled person usually turns to the local clients' rights advocate.

Dan Florio, 30, is San Diego's clients' rights advocate. His employer, Protection and Advocacy Incorporated, is a nonprofit organization. An attorney from New Jersey, Florio has worked as the clients' rights advocate since June of 1999. He also has spinal muscular atrophy, a neuromuscular disorder, also known as Werding-Hoffman disease.

Florio's fourth-floor office downtown reflects the nature of his work, as it is adapted for full wheelchair accessibility. "I work with people with developmental disabilities, helping them to understand their rights and working with others who are interested in protecting the rights of people with disabilities. That's a small part of what I do. Primarily, I advise people on what things they're entitled to from the regional center, from schools, from public agencies; part of what I do is tell them what rights they have, and the other part is to advise them as to what types of things might be appropriate for them and what strategies may work best in getting what they need.

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"I advise some clients directly. More often, I advise family members or social workers or other people who are working with them. I always represent the clients, even when I'm talking to these other people. I'll deal with things like regional center eligibility, where the regional center claims that the person doesn't have a developmental disability and I believe that they do.

"I represented a client at an eligibility hearing recently -- we're still awaiting a decision. The regional center presented two witnesses: Their intake coordinator and their psychologist. They argued that my client did not have a developmental disability by virtue of a couple of things. One was that they claimed some of her IQ scores from the past were above the level of what's considered mentally retarded. They also claimed that her level of functioning was not consistent with the functioning level of someone who required similar treatment. They also claimed that even if she did have a condition that was analogous to retardation, it did not manifest itself by age 18, and the other indications were that she possibly had a learning disability instead. There were several arguments thrown about. We presented her mother, her sister, and the head of the group home where she lived. As an expert witness, we brought in a neuropsychologist who performed a detailed assessment of her abilities. It was a fairly complicated case -- probably more complicated than the things we usually address here."

More often than not, the meetings and hearings Florio assists at don't reach the courtroom level. "In general, hearings against the regional center are held at the regional center. It was mediated by an administrative-law judge, and he will make the final decision.

"That's 90 percent or more of what I do -- just advising people, but there are other things. I represent clients at less formal meetings, like IEPs -- an individualized educational plan. I'll usually represent parents in these cases. The equivalent at the regional centers is IPPs [individual program plan]. That's where they develop a program to determine what a person's goals are and what kind of support they'll need to reach those goals." It should be noted that "client," "IPP," and other jargon are part of the language of working with the developmentally disabled. The term "client" is gradually being replaced with "consumer." "Mentally disabled" has been replaced by "developmentally disabled." The term "disabled" is being gradually replaced by the phrase "a person with a disability." While even the administrators at nonprofit agencies joke that these are all "politically correct terms," they are also part of an ongoing effort to treat clients as individuals on a more personal level.

Every developmentally disabled client who is trained in a regional center, school, or nonprofit agency like the Arc of San Diego must have an IPP. "People have periodic individual program plans. At minimum, you'll have the consumer and representatives of the regional center. Often you'll have other people in the consumer's life -- whoever wants to be there, really. It could be family members, friends, workers at day programs, doctors, psychiatrists, psychologists. They will discuss where the person is, what their living situation is, what their interests are, what their goals are -- long term/short term, that sort of thing. Out of this process they determine what kind of support the person will need. And when the person requests the support, that has to be taken seriously. Let's say I want to learn how to cook. So I'll need workers to teach me how to cook. That's something that has to be seriously considered. If it will help the person to function more normally in the community, then [the regional center is] under an obligation to provide it.

"If there's an actual conflict between my client and the regional center or the school or other agencies, I'll represent them at an administrative hearing and at mediations. I also write letters on behalf of clients." The efficacy of the Lanterman Act is apparent by the cooperation Florio is able to gain for his clients. "Most of the people I deal with are working for the same reasons I am. Usually we can come to some sort of understanding.

"The Lanterman Act is considered the most progressive in the country for those with developmental disabilities. There are analogous laws in other states, but ours is considered the most strongly pro-consumer. The idea of it is to create an entitlement for people with developmental disabilities to services and support that they need to function as normally as possible in the community. It's funded by the state. The state is divided into 21 regions; this region includes all of San Diego and Imperial Counties. [The State Department of Developmental Services] contract out with nonprofit organizations in each of these regions to act as regional centers for people with developmental disabilities. The Arc is a service provider, which in turn contracts with the regional center. The center is there to coordinate services for people -- let them know what services are available, help them determine what services they need, and to actually provide those services when they're not provided by so-called 'generic agencies' -- an agency that is legally obligated to provide services to the general public, such as In Home Supportive Services (IHSS).

"Many of my clients require what is called 'protective supervision,' which is basically people to monitor them. They have a mental condition that would cause them to engage in self-injurious behavior. They might accidentally set the house on fire, or leave the water on or cross the street without looking -- something like that. These are people who aren't capable of understanding danger. They're a really small percentage of my clients, yet a sizable population. So if someone needed supervision like that, the regional center would not be obligated to pay for that service because it is provided by another agency -- in this case, IHSS.

"In employment, someone's in a situation where they don't have adequate supports in place. Maybe they've got a job, maybe it's even a supported-employment job where someone is keeping an eye on their work, but maybe they don't have a behavioral plan in place. This is the kind of service the regional center can provide. Some have behavioral issues that stem from their developmental disability and make it more difficult to function in society. When that's the problem, a qualified person can do a behavioral assessment and then identify the antecedents to the behavior problems. What can people around them do to prevent the problem? What kind of incentives might be given to prevent the problem, and so on. You implement the behavioral plan, which may involve fairly simple things or it may involve more extensive things. For example, some people require a one-on-one aide who will help redirect them. I'm not talking about a licensed psychologist; I'm talking about someone with the training to know how to help someone in a certain situation. Some people with autism have a hard time with focusing and keeping their eye on their work. They may start to forget that and begin an inappropriate behavior. So [the aide] will say a few words to them to keep them focused when they see the antecedents happening, the certain patterns of behavior that suggest that they're about to lose their focus.

"For many people the job coach will be able to provide enough support to do that, but in other cases, you'll need more extensive support. In many cases there is a problem because they have not thoroughly addressed all of the options. Maybe there was a behavior plan done ten years ago that everyone's forgotten about but there hasn't been anything done recently -- or maybe there is no behavior plan. They tend to not address these things adequately unless you push them into addressing them."

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— In 1969, Assemblyman Frank Lanterman, a Republican from La Cañada, introduced a bill known as the Lanterman Mental Retardation Services Act. Finally passed in 1977, the Lanterman Act drives most of the services for the developmentally disabled in both the public and private sectors and protects their rights. The act was soon followed by the creation of regional centers throughout the state. These centers offer the disabled most of the services mandated by the Lanterman Act (San Diego's regional center is in Kearny Mesa on Ruffin Road). When the disabled are not treated fairly on the job, not provided with the services or amenities mandated by the law, or abused, the regional center or disabled person usually turns to the local clients' rights advocate.

Dan Florio, 30, is San Diego's clients' rights advocate. His employer, Protection and Advocacy Incorporated, is a nonprofit organization. An attorney from New Jersey, Florio has worked as the clients' rights advocate since June of 1999. He also has spinal muscular atrophy, a neuromuscular disorder, also known as Werding-Hoffman disease.

Florio's fourth-floor office downtown reflects the nature of his work, as it is adapted for full wheelchair accessibility. "I work with people with developmental disabilities, helping them to understand their rights and working with others who are interested in protecting the rights of people with disabilities. That's a small part of what I do. Primarily, I advise people on what things they're entitled to from the regional center, from schools, from public agencies; part of what I do is tell them what rights they have, and the other part is to advise them as to what types of things might be appropriate for them and what strategies may work best in getting what they need.

Sponsored
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"I advise some clients directly. More often, I advise family members or social workers or other people who are working with them. I always represent the clients, even when I'm talking to these other people. I'll deal with things like regional center eligibility, where the regional center claims that the person doesn't have a developmental disability and I believe that they do.

"I represented a client at an eligibility hearing recently -- we're still awaiting a decision. The regional center presented two witnesses: Their intake coordinator and their psychologist. They argued that my client did not have a developmental disability by virtue of a couple of things. One was that they claimed some of her IQ scores from the past were above the level of what's considered mentally retarded. They also claimed that her level of functioning was not consistent with the functioning level of someone who required similar treatment. They also claimed that even if she did have a condition that was analogous to retardation, it did not manifest itself by age 18, and the other indications were that she possibly had a learning disability instead. There were several arguments thrown about. We presented her mother, her sister, and the head of the group home where she lived. As an expert witness, we brought in a neuropsychologist who performed a detailed assessment of her abilities. It was a fairly complicated case -- probably more complicated than the things we usually address here."

More often than not, the meetings and hearings Florio assists at don't reach the courtroom level. "In general, hearings against the regional center are held at the regional center. It was mediated by an administrative-law judge, and he will make the final decision.

"That's 90 percent or more of what I do -- just advising people, but there are other things. I represent clients at less formal meetings, like IEPs -- an individualized educational plan. I'll usually represent parents in these cases. The equivalent at the regional centers is IPPs [individual program plan]. That's where they develop a program to determine what a person's goals are and what kind of support they'll need to reach those goals." It should be noted that "client," "IPP," and other jargon are part of the language of working with the developmentally disabled. The term "client" is gradually being replaced with "consumer." "Mentally disabled" has been replaced by "developmentally disabled." The term "disabled" is being gradually replaced by the phrase "a person with a disability." While even the administrators at nonprofit agencies joke that these are all "politically correct terms," they are also part of an ongoing effort to treat clients as individuals on a more personal level.

Every developmentally disabled client who is trained in a regional center, school, or nonprofit agency like the Arc of San Diego must have an IPP. "People have periodic individual program plans. At minimum, you'll have the consumer and representatives of the regional center. Often you'll have other people in the consumer's life -- whoever wants to be there, really. It could be family members, friends, workers at day programs, doctors, psychiatrists, psychologists. They will discuss where the person is, what their living situation is, what their interests are, what their goals are -- long term/short term, that sort of thing. Out of this process they determine what kind of support the person will need. And when the person requests the support, that has to be taken seriously. Let's say I want to learn how to cook. So I'll need workers to teach me how to cook. That's something that has to be seriously considered. If it will help the person to function more normally in the community, then [the regional center is] under an obligation to provide it.

"If there's an actual conflict between my client and the regional center or the school or other agencies, I'll represent them at an administrative hearing and at mediations. I also write letters on behalf of clients." The efficacy of the Lanterman Act is apparent by the cooperation Florio is able to gain for his clients. "Most of the people I deal with are working for the same reasons I am. Usually we can come to some sort of understanding.

"The Lanterman Act is considered the most progressive in the country for those with developmental disabilities. There are analogous laws in other states, but ours is considered the most strongly pro-consumer. The idea of it is to create an entitlement for people with developmental disabilities to services and support that they need to function as normally as possible in the community. It's funded by the state. The state is divided into 21 regions; this region includes all of San Diego and Imperial Counties. [The State Department of Developmental Services] contract out with nonprofit organizations in each of these regions to act as regional centers for people with developmental disabilities. The Arc is a service provider, which in turn contracts with the regional center. The center is there to coordinate services for people -- let them know what services are available, help them determine what services they need, and to actually provide those services when they're not provided by so-called 'generic agencies' -- an agency that is legally obligated to provide services to the general public, such as In Home Supportive Services (IHSS).

"Many of my clients require what is called 'protective supervision,' which is basically people to monitor them. They have a mental condition that would cause them to engage in self-injurious behavior. They might accidentally set the house on fire, or leave the water on or cross the street without looking -- something like that. These are people who aren't capable of understanding danger. They're a really small percentage of my clients, yet a sizable population. So if someone needed supervision like that, the regional center would not be obligated to pay for that service because it is provided by another agency -- in this case, IHSS.

"In employment, someone's in a situation where they don't have adequate supports in place. Maybe they've got a job, maybe it's even a supported-employment job where someone is keeping an eye on their work, but maybe they don't have a behavioral plan in place. This is the kind of service the regional center can provide. Some have behavioral issues that stem from their developmental disability and make it more difficult to function in society. When that's the problem, a qualified person can do a behavioral assessment and then identify the antecedents to the behavior problems. What can people around them do to prevent the problem? What kind of incentives might be given to prevent the problem, and so on. You implement the behavioral plan, which may involve fairly simple things or it may involve more extensive things. For example, some people require a one-on-one aide who will help redirect them. I'm not talking about a licensed psychologist; I'm talking about someone with the training to know how to help someone in a certain situation. Some people with autism have a hard time with focusing and keeping their eye on their work. They may start to forget that and begin an inappropriate behavior. So [the aide] will say a few words to them to keep them focused when they see the antecedents happening, the certain patterns of behavior that suggest that they're about to lose their focus.

"For many people the job coach will be able to provide enough support to do that, but in other cases, you'll need more extensive support. In many cases there is a problem because they have not thoroughly addressed all of the options. Maybe there was a behavior plan done ten years ago that everyone's forgotten about but there hasn't been anything done recently -- or maybe there is no behavior plan. They tend to not address these things adequately unless you push them into addressing them."

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