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Protection & Advocacy Inc. Advancing the Rights of Californians with Disabilities |
LEGISLATION & PUBLIC 1029 J Street, Suite 150 |
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Principles of Health
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For children and adults with disabilities who are not
eligible for public health care coverage, the only alternative outside of
County systems for indigents is private health benefit plans. An important
goal for children and adults with disabilities is affordable universal health
care so that they are not subjected to adverse selection or exclusion because
of the actual or perceived cost or complexity of their health care needs. Protection
& Advocacy should support legislation that removes barriers to accessing
affordable and appropriate health care and legislation that expands
entitlement to affordable and appropriate health care such as the recently
enacted SB 2, enrolled as Chapter 673, Statutes of 2003. 1.
Children and adults with disabilities particularly
need consumer protections in order to ensure access to appropriate health
care. Examples of consumer protections important to persons with disabilities
include:
§
Fairness in the appeal and grievance
procedures through requirements of time lines, adequate notices (i.e.,
notices that explain how the application of the law or plan provision to the
facts led to the determination), public versus secret criteria in approving
and denying services, review of medical decisions by qualified personnel,
external review of grievances; § Access to independent second opinions including in an appeal process; and
§
External quality assurance reviews. 2.
Individuals and families should have the opportunity
to preserve continuity of health care at reasonable rates such as when losing
a job and the health benefit plan coverage linked to that job. Examples of
how this principle could be applied include:
§
Providing the opportunity for families with
fluctuating income to pay for continuing coverage under the new Healthy
Families even when their income goes above the Federal Poverty Level income
cap for being able to buy into Healthy Families coverage initially;
§
Authorizing California Children’s Services (
§
Supporting initiatives by county programs for
uninsured to assist in paying for COBRA continuation benefits;
§
Extending and expanding the right to convert
group into individual health benefit coverage;
§
Financial assistance in paying for COBRA
coverage for those receiving unemployment insurance benefits;
§
Financial assistance in paying for COBRA for
individuals not covered by state or federal family medical leave act
protections who are receiving the short-term State Disability Insurance (SDI);
and
§
Requiring employers to include in their COBRA
notices information in addition to that currently required, such as
information about the procedures for qualifying individuals with disabilities
for 29 months instead of 18 months, about state programs for paying Cobra
premiums under Medi-Cal when cost effective to do so. 3.
Children and adults with disabilities should not be
subjected to rate, access, or scope of services discrimination because of the
actual or perceived cost and/or complexity involved in delivering appropriate
care or because of their category of disability. Examples of how persons with
disabilities may be subject to discrimination include:
§
Benefit limits or exclusions which have the
effect of targeting particular disabilities;
§
Denial of access to equipment and services
that address functional limitations;
§
Underwriting exclusion based on disability
label rather than realistic cost projections;
§
Practices by plans and participating medical groups
to "cherry pick” low cost patients and to “lemon drop" patients
that are perceived as expensive;
§
State law that extends health benefit coverage
for adult disabled children but excludes adult children with psychiatric
disabilities; and
§
Inadequate protections for individuals who may
elect genetic testing. 4.
Children and adults with disabilities should have
access to health care that effectively and appropriately addresses their
health care needs. Examples of how this principle could be applied include:
§
Requiring health benefit plans to include in
their provider network sufficient specialists including pediatric specialists
and certain types of providers such as rehabilitation hospital outpatient
clinics to evaluate and prescribe wheelchairs and seating systems, specialty
care centers that meet
§
Requiring plans to go outside of their
provider network when necessary to provide medically appropriate care;
§
Providing for realistic annual and lifetime
dollar caps in the Major Risk Medical Insurance Program (MRMIP), which is the
assigned risk program for those unable to secure affordable individual health
plan coverage because of their health care needs;
§
Requiring reasonable coverage of investigational
procedures particularly for low incidence disabilities and conditions;
§
Requiring accessibility and accommodation to
mobility, communication, cognitive and other disability limitations;
§
Imposing limitations on the practices of
entities performing authorization and/or utilization review of mental
health/behavioral services to address arbitrary policies such as a policy of
only authorizing medication;
§
Expanding the minimum scope of benefits to
include durable medical equipment, mental health treatment services that
include rehabilitative services, psychosocial intervention, residential
treatment, and case management;
§
Requiring health plans to do “benefit
exchanges” when necessary to enable a person with a disability to remain in
the community – i.e., for a child or adult who would qualify for acute or a
nursing facility level care, to use those treatment dollars for additional
home health or other support services to enable the person to remain in his
own home, or for a child or adult who otherwise would qualify for acute
psychiatric care to use those treatment dollars for community based
rehabilitative alternatives; and
§
Ensuring that a plan’s stop-loss coverage does
not encourage institutionalization over services in the home or community –
i.e., coverage by Lloyds of London for acute care costs in individual cases
above a certain amount but not for analogous home health care costs so that
at a certain point the health plan is no longer paying for acute care so the
plan has no incentive to provide home health care in the home because it
would have to pay for those services. 5.
Affordable healthcare should be available to limited
income individuals and families. Examples of how this principle could be
applied include:
§
The exercise and implementation of the federal
option available under Healthy Families to cover limited income parents in
addition to children; and
§
Limitation on the amount by which annual
premiums may be increased or on the setting of premiums when converting a
group to an individual policy; (3) requiring employer participation in the
cost of individual and family health benefit plan coverage; (4) encouraging
or requiring larger risk pools to reduce adverse selection and public
subsidies for health care. 6.
The health care system should provide for the active
participation of the client and respect for the role of the client in the
delivery of health care services.
§
The plan should facilitate participation by
the client (and the client’s family as provided by law) in the development of
a treatment plan, including selecting services from a range of options
offered under the plan.
§
Individuals with severe or complex disability
or health care needs should have the option of having a specialist as their
primary physician.
§
Individuals with severe or complex disability
or health care needs should have the option for a case manager who is outside
the medical group including the primary physician;
§
Plans should be required to comply with
enrollees’ advance directives. 7.
State laws providing consumer protections to health
benefit plan enrollees also should apply to persons who are covered through
employment by so-called "self-insured" plans under Employee
Retirement Income Security Act (ERISA). To the extent federal ERISA laws
cannot be changed to enable a state to extend state law protections to its
citizens covered under self-insured plans, the State nonetheless should
pursue every option to protect the healthcare rights of individuals covered
under such self-insured plans. The State like should seek federal ERISA
waiver legislation to support any State initiative moving toward expanded or
universal healthcare. 8.
Medical necessity standards relating to what services
are authorized or covered should include not only services necessary to
protect life or health or improve function, but also:
§
Services necessary to slow loss of function or
to maintain function such as physical and occupational therapy services for
persons with progressive muscle disabilities;
§
Services necessary to maintain health
including mental health and health stability;
§
Preventive and screening services;
§
Services necessary to ameliorate pain;
§
Services to address physical anomalies or
deformities that place an individual outside the normal spectrum of physical
appearance – i.e., services to remove a benign facial tumor or correct a lip
cleft; and § Services necessary to support full participation in family and community life including work. |
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Policy #1012.01 |
Adopted |
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