125200. The Legislature finds and declares that there are many
persons in California who are victims of chronic and degenerative
genetic conditions, who experience a wide range of degenerating
conditions including mental and physical deterioration. For some of
these conditions, there is no known prior detection or subsequent
treatment.
The Legislature further finds and declares that appropriate
supportive care services, both in and out of the home, are very often
unavailable, due to the lack of resource identification and
referral, and the lack of case management services.
125205. The department and the State Department of Social Services
shall, after consultation with the Genetically Handicapped Persons
Program of the department, from the Genetically Handicapped Persons
Program Advisory Committee, and from consumer organizations
representing persons with chronic and degenerative conditions, as
defined in Section 125210, compile a list of long-term care resources
that serve adults with chronic and degenerative conditions, as
defined. The list of resources shall include those that have already
been identified by the Genetically Handicapped Persons Program as
serving persons with Huntington's disease, Joseph's disease, and
Friedrich's ataxia, and shall include those that have already been
identified by consumer organizations representing persons with
chronic and degenerative conditions. The list of resources shall
include, but not be limited to, the following:
(a) Public and private skilled nursing facilities and intermediate
care facilities.
(b) Public and private community residential care facilities.
(c) Public and private out-of-home long-term care resources such
as day activity programs, and in-home support service programs.
Nothing in this section shall require the Department of Health
Services to undertake a survey of long-term care facilities or
programs in the state for the purposes of carrying out the
requirements of this section.
The information shall be made available to the public, upon
request, through the Genetically Handicapped Persons Program of the
department.
125210. For the purposes of this article, chronic and degenerative
diseases shall include those conditions that are neurological and
neuromuscular in origin, including such disorders as Huntington's
disease, Friedrich's ataxia, Joseph's disease, and other disorders
that are determined by the department to be similar in origin and
clinical manifestation to the named disorders, and that affect
adults.
125215. The department and the State Department of Social Services
shall review regulations that currently provide disincentives to
providers of in-home and out-of-home long-term care resources, as
defined in Section 125205, to accept and serve persons with chronic
and degenerative disorders. The review shall be conducted with
assistance and input from the Genetically Handicapped Persons Program
of the department, and from the Genetically Handicapped Persons
Program Advisory Committee. These departments shall provide a list of
those regulations to the Legislature by September 1, 1982. The
regulations subject to review shall be those regulations that do the
following:
(a) Affect the admission of patients to state-licensed skilled
nursing facilities, intermediate care facilities, and community
residential care facilities.
(b) Affect the staffing ratios necessary to care for persons with
chronic and degenerative conditions, as defined, within those
facilities.
(c) Affect the likelihood of facilities, or of day care programs
and in-home support service programs, to refuse the admission of
persons with chronic and degenerative conditions, solely on the basis
of anticipated jeopardy to their licensing, or on the basis of
anticipated liability to the facilities arising from instances where
a person's degenerative condition, by its own clinical merits,
results in medical complications that are, in fact, entirely
unrelated to the quality of care provided by the facility or program.
125220. The actions undertaken pursuant to this article shall not
impose additional state obligations or expenditures for the care of
persons with chronic and degenerative conditions, as defined by this
article, unless the Legislature enacts a statute specifically
appropriating money for the additional obligations or expenditures.
125200. The Legislature finds and declares that there are many
persons in California who are victims of chronic and degenerative
genetic conditions, who experience a wide range of degenerating
conditions including mental and physical deterioration. For some of
these conditions, there is no known prior detection or subsequent
treatment.
The Legislature further finds and declares that appropriate
supportive care services, both in and out of the home, are very often
unavailable, due to the lack of resource identification and
referral, and the lack of case management services.
125205. The department and the State Department of Social Services
shall, after consultation with the Genetically Handicapped Persons
Program of the department, from the Genetically Handicapped Persons
Program Advisory Committee, and from consumer organizations
representing persons with chronic and degenerative conditions, as
defined in Section 125210, compile a list of long-term care resources
that serve adults with chronic and degenerative conditions, as
defined. The list of resources shall include those that have already
been identified by the Genetically Handicapped Persons Program as
serving persons with Huntington's disease, Joseph's disease, and
Friedrich's ataxia, and shall include those that have already been
identified by consumer organizations representing persons with
chronic and degenerative conditions. The list of resources shall
include, but not be limited to, the following:
(a) Public and private skilled nursing facilities and intermediate
care facilities.
(b) Public and private community residential care facilities.
(c) Public and private out-of-home long-term care resources such
as day activity programs, and in-home support service programs.
Nothing in this section shall require the Department of Health
Services to undertake a survey of long-term care facilities or
programs in the state for the purposes of carrying out the
requirements of this section.
The information shall be made available to the public, upon
request, through the Genetically Handicapped Persons Program of the
department.
125210. For the purposes of this article, chronic and degenerative
diseases shall include those conditions that are neurological and
neuromuscular in origin, including such disorders as Huntington's
disease, Friedrich's ataxia, Joseph's disease, and other disorders
that are determined by the department to be similar in origin and
clinical manifestation to the named disorders, and that affect
adults.
125215. The department and the State Department of Social Services
shall review regulations that currently provide disincentives to
providers of in-home and out-of-home long-term care resources, as
defined in Section 125205, to accept and serve persons with chronic
and degenerative disorders. The review shall be conducted with
assistance and input from the Genetically Handicapped Persons Program
of the department, and from the Genetically Handicapped Persons
Program Advisory Committee. These departments shall provide a list of
those regulations to the Legislature by September 1, 1982. The
regulations subject to review shall be those regulations that do the
following:
(a) Affect the admission of patients to state-licensed skilled
nursing facilities, intermediate care facilities, and community
residential care facilities.
(b) Affect the staffing ratios necessary to care for persons with
chronic and degenerative conditions, as defined, within those
facilities.
(c) Affect the likelihood of facilities, or of day care programs
and in-home support service programs, to refuse the admission of
persons with chronic and degenerative conditions, solely on the basis
of anticipated jeopardy to their licensing, or on the basis of
anticipated liability to the facilities arising from instances where
a person's degenerative condition, by its own clinical merits,
results in medical complications that are, in fact, entirely
unrelated to the quality of care provided by the facility or program.
125220. The actions undertaken pursuant to this article shall not
impose additional state obligations or expenditures for the care of
persons with chronic and degenerative conditions, as defined by this
article, unless the Legislature enacts a statute specifically
appropriating money for the additional obligations or expenditures.
125200. The Legislature finds and declares that there are many
persons in California who are victims of chronic and degenerative
genetic conditions, who experience a wide range of degenerating
conditions including mental and physical deterioration. For some of
these conditions, there is no known prior detection or subsequent
treatment.
The Legislature further finds and declares that appropriate
supportive care services, both in and out of the home, are very often
unavailable, due to the lack of resource identification and
referral, and the lack of case management services.
125205. The department and the State Department of Social Services
shall, after consultation with the Genetically Handicapped Persons
Program of the department, from the Genetically Handicapped Persons
Program Advisory Committee, and from consumer organizations
representing persons with chronic and degenerative conditions, as
defined in Section 125210, compile a list of long-term care resources
that serve adults with chronic and degenerative conditions, as
defined. The list of resources shall include those that have already
been identified by the Genetically Handicapped Persons Program as
serving persons with Huntington's disease, Joseph's disease, and
Friedrich's ataxia, and shall include those that have already been
identified by consumer organizations representing persons with
chronic and degenerative conditions. The list of resources shall
include, but not be limited to, the following:
(a) Public and private skilled nursing facilities and intermediate
care facilities.
(b) Public and private community residential care facilities.
(c) Public and private out-of-home long-term care resources such
as day activity programs, and in-home support service programs.
Nothing in this section shall require the Department of Health
Services to undertake a survey of long-term care facilities or
programs in the state for the purposes of carrying out the
requirements of this section.
The information shall be made available to the public, upon
request, through the Genetically Handicapped Persons Program of the
department.
125210. For the purposes of this article, chronic and degenerative
diseases shall include those conditions that are neurological and
neuromuscular in origin, including such disorders as Huntington's
disease, Friedrich's ataxia, Joseph's disease, and other disorders
that are determined by the department to be similar in origin and
clinical manifestation to the named disorders, and that affect
adults.
125215. The department and the State Department of Social Services
shall review regulations that currently provide disincentives to
providers of in-home and out-of-home long-term care resources, as
defined in Section 125205, to accept and serve persons with chronic
and degenerative disorders. The review shall be conducted with
assistance and input from the Genetically Handicapped Persons Program
of the department, and from the Genetically Handicapped Persons
Program Advisory Committee. These departments shall provide a list of
those regulations to the Legislature by September 1, 1982. The
regulations subject to review shall be those regulations that do the
following:
(a) Affect the admission of patients to state-licensed skilled
nursing facilities, intermediate care facilities, and community
residential care facilities.
(b) Affect the staffing ratios necessary to care for persons with
chronic and degenerative conditions, as defined, within those
facilities.
(c) Affect the likelihood of facilities, or of day care programs
and in-home support service programs, to refuse the admission of
persons with chronic and degenerative conditions, solely on the basis
of anticipated jeopardy to their licensing, or on the basis of
anticipated liability to the facilities arising from instances where
a person's degenerative condition, by its own clinical merits,
results in medical complications that are, in fact, entirely
unrelated to the quality of care provided by the facility or program.
125220. The actions undertaken pursuant to this article shall not
impose additional state obligations or expenditures for the care of
persons with chronic and degenerative conditions, as defined by this
article, unless the Legislature enacts a statute specifically
appropriating money for the additional obligations or expenditures.
