Q. I live in Northern California and currently use a network of medical providers to keep me healthy, all based locally. I have heard rumors that the state will soon enroll me (whether I want this or not) in a Health Maintenance Organization of its choosing just because I am on Medi-Cal. Is that true, and if so what can I do to prevent it?
My disability causes paralysis and may be progressive. My care has been provided by several personal assistants who were paid through the state In-Home Supportive Services program. I have been getting round-the-clock care that allowed me to move away from my parents’ home to live independently for a while at college. The state health services agency recently cut back my IHSS providers from 24 hours per day to just 13 hours per day. That forced me to drop out of school and move back home so my mother can help supervise my caregivers. Also, in the past, IHSS would pay for things like cooking, but I was recently told that would not be the case if the governor’s proposed budget cuts are accepted. My mother, who works long hours, no longer has time to do that for me.
I want to avoid hospitalization or nursing home care at all costs. I am even willing to consider moving to another state where relatives might be able to help me out, but I hear that similar cuts are taking place across the country. What is behind these cuts and how serious is it going to get? What can I do to help stop these changes from happening?
— Worried and Scared
A. With the economy still struggling and the federal government and most states facing financial crises, unfortunately Health and Human Services programs are usually the easiest cuts for lawmakers to use in trying to balance budgets. Federal Medicare and Medicaid programs have used many strategies to trim costs, from instituting unpopular competitive bidding for durable medical equipment like wheelchairs to cutting the rates they pay to providers of supplies and medical services. They have also cut back on Medicaid payments to states.
Medicaid, known as Medi-Cal in California, is a multibillion-dollar state health program that is only partially supported with federal dollars. California and many other states continue to target programs like that for cutting costs even though they serve the most vulnerable members of the population. Making cuts is not as easy as in the past, as states are now required to support individuals in community settings, not just in institutions as was once the case. Also, Medicaid requires states to pay a higher percentage of the costs for community care than if the individual was living in a nursing home.
To cut costs, some states are shifting from a fee-for-service model for medical services to managed care — Health Maintenance Organizations. Problems have arisen because many physicians and other medical providers will not accept the extremely low rates that are paid in the Medicare and Medicaid programs. HMOs compete to take over that business because they feel they can make a profit on the large volume of patients involved. Unfortunately, some HMOs are the subject of complaints about difficulties encountered in making appointments, quality of care, timely reimbursement to providers, and even the limited access to service providers in the territory that they cover. Lawsuits have been filed in states where HMOs have been instituted, and California is threatened with lawsuits if they attempt to do the same.
In trying to balance the budget, California’s governor has proposed eliminating payments for domestic chores covered in the state’s In-Home Supportive Services program in the past, including cooking, cleaning and laundry. The governor assumes that other residents in the home can provide such services for free. His budget also proposes removing more individuals from the Medi-Cal program, making additional cuts in rates paid to personal care assistants, and continuing percentage reductions in provider rates and hours of service allowable. Since these cuts threaten the independence and overall health of many, they are being challenged, with a promise of lawsuits if instituted.
Coordinated outcry, protests and informed testimony from those who use Medicaid — especially when directed toward elected officials — is often the most successful strategy in preventing draconian cuts in services as proposed above. Consumer groups and disability organizations have formed coalitions to fight these changes, and the state Protection and Advocacy agencies that are represented by the National Disability Rights Network are leading the battle in Congress, state legislatures and in the courts.
To add your voice to the outcry, locate your state’s P&A agency at ndrn.org. Those agencies can also link you up with your state consumer coalitions. Unfortunately, this situation may continue for years, so working with your statewide coalitions may be the best way to successfully challenge cuts in programs that are vital to your independence and health.
Michael Collins is the former executive director of the National Council on Disability and of the California State Independent Living Council. Send questions to firstname.lastname@example.org.