Protection & Advocacy Inc.

 

Advancing the Rights of Californians with Disabilities

LEGISLATION & PUBLIC
INFORMATION UNIT

1029 J Street, Suite 150
Sacramento CA 95814
Telephone: (916) 497-0331
Fax: (916) 497-0813
www.pai-ca.org

 

Principles of Health Care Coverage for
Children and Adults with Disabilities Outside the
Public (Medi-Cal and Medicare) Systems

Adopted 12/6/2003

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 (CCS) to cover Consolidated Omnibus Budget Reconciliation Act (COBRA) continuation benefits when it makes economic sense to do so or during the often extended time period when the Medi-Cal program is determining cost effectiveness of covering the cost of premiums;

§            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 CCS standards when covering children with CCS eligible conditions;

§            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.

Policy #1012.01

Adopted 12/6/2003