The following excerpt is taken from Chapter 7 of
Bipolar Disorders: A Guide to Helping Children and Adolescents
by Mitzi Walsh, copyright 2000 by
O'Reilly & Associates, Inc. For book orders/information, call
(800) 998-9938. Permission is granted to print and distribute this
excerpt for noncommercial use as long as the above source is
included. The information in this article is meant to educate and
should not be used as an alternative for professional medical care.
Some US families have an extremely serious health insurance problem: they just can't get any. If this ever-growing group includes you, the main publicly funded option is Medicaid, with or without a Katie Beckett waiver (see the section "The Katie Beckett waiver," later in this chapter). The federal government also has the Tricare plan for those in current military service and their dependents and, through the Veterans Administration, coverage for former military personnel.
Medicaid is the federal health insurance program for those who are not senior citizens. It will pay for doctor and hospital bills; six prescription medications per month; physical, occupational, or speech therapy; and adaptive equipment. If you are old enough to receive regular Social Security, or if you receive Social Security survivor's benefits, your child should already be eligible for Medicaid. Otherwise you can get Medicaid coverage for your child by becoming eligible for SSI (see below) or, in some cases, by qualifying for state health plans for children that are based on Medicaid.
I am on Social Security, and my daughter's care is court-ordered. Therefore, the state of Arizona pays for her care. --Sue, mother of 16-year-old Vanessa (diagnosed bipolar I disorder, OCD, borderline personality disorder, passive-aggressive personality disorder)
There is one more, drastic, way to get Medicaid: making your child a ward of the state by giving him up to the foster care system. Unfortunately, every year hundreds of families whose children are mentally ill must make this agonizing choice simply to ensure that their children can be admitted into a publicly funded residential facility, or even just to get them medical and mental health care. This means not only losing physical custody of your child in most cases, but also losing the right to be involved in decisions about his healthcare, education, and living conditions. In almost every case you will retain visitation rights and some role in treatment decisions--after all, you have not had your parental rights terminated by a judge due to abuse or neglect. You may be treated as if you did, however. Transferring parental rights is done in family court.
Medicaid is one of the few insurance plans that will pay for in-home therapy services, therapeutic foster care, partial hospitalization or day treatment, crisis services, and long-term hospitalization or residential care for people with mental illnesses. Although it is excessively bureaucratic, it is in many ways superior to private insurance coverage for people who have serious problems with mental illness.
Supplemental Security Income (SSI) is a related benefit. Disabled adults and children who qualify for SSI automatically qualify for healthcare coverage via Medicaid. SSI provides a small monthly stipend for people with serious health impairments and either low family income (for children or adults), or limited ability to earn a living (for adults). Benefits range from around $300 to $500 per month for children or for adults living in another person's household, to over $600 per month for teenagers or adults living independently. This money is only to be used for the direct needs of the disabled individual: it is not family income per se. You will need to keep receipts for all your child-related expenditures.
To remain eligible for SSI, your assets and income from other sources usually must be limited. This can force parents desperate for Medicaid coverage for their children to spend down any savings and let their careers slide. It's a particularly unfair situation, since a stable home situation often depends on having enough money saved to permit flexibility during periods of crisis. Current SSI and AFDC regulations make it very hard for parents to provide a safety net for their families today, or to provide for their child's adult security later on.
To apply for SSI and/or Medicaid, go to your nearest Social Security office or call the Social Security hotline at (800) 772-1213 for a eligibility pre-screening. If you are given a green light by the eligibility screener, your next step is making an initial interview appointment and filling out a disability report (Form SSA-3820-BK) for your child. This eleven-page form asks dozens of difficult questions, including information about every physician or clinic that might have medical records or test results for your child, information about his school performance and academic testing, and information about your previous contacts with public health agencies. You'll want to provide copies of as many of your child's mental health records as you can.
If you need help in completing this form (and many families do), a county or school social worker may be able to assist you. Disability advocacy groups may also have staff members or volunteers who can assist you.
Make sure this form and all of your records are complete when your initial interview takes place. You can be interviewed in person or over the phone. Most experienced applicants say in-person interviews are best, but they aren't always possible. Careful record-keeping and having phone numbers and addresses for your doctors and school personnel handy are extra important if you choose a phone interview.
At the interview, the Social Security representative will go over the disability report with you. She may ask extra questions. Some of them may seem rather prying to people who have never applied for any type of government assistance.
In fact, the SSI application process has become increasingly adversarial over the past two decades. You may get the distinct impression that the people interviewing you think that you and your child are trying to con them--and your impression may be right. The Social Security department will order an Individualized Functional Assessment (IFA), which may mean a review of your medical documentation by Social Security representatives and/or interviews and observations of your child by a psychiatrist working for Social Security. You have the right to be present for this interview, although parents report that some doctors seem to want to exclude them from the process.
Most applicants for SSI are rejected on their first try. You do have the right to appeal SSI denial, however--and you should, because a high percentage of appeals succeed. In addition, successful appellants get a lump sum equal to the payments they should have received had their original application been properly approved. This sum can be several thousand dollars, and has helped many families fund things like more secure housing, special tutoring, and expert psychiatric care.
If your application for SSI is denied, contact a disability advocacy agency through the National Association of Protection and Advocacy Systems. These publicly funded agencies can help you through the application process, and most can provide legal assistance if you need to appeal.
Additional information about the SSI program for children with disabilities is available online at http://www.ssas.com/ssikids.html.
SSI is usually an income-dependent program. If you are working and earn more than the regulations allow, your child will not be eligible for SSI. In some cases, family income will reduce the amount of SSI received to as low as one dollar per month, but the beneficiary will get full medical coverage. Other families must apply for a special income-limit waiver called the Katie Beckett waiver.
The waiver program is named for Katie Beckett, a severely handicapped child whose parents wanted to care for her at home. Government regulations would only cover Katie's care in an expensive hospital setting. Her family, which could not bear the full cost of at-home care but had an income too high to qualify for SSI, successfully lobbied for a program that would allow seriously handicapped children to qualify for Medicaid coverage.
The waiver program is administered at a state level. Some states have severely limited the number of Katie Beckett waivers they will allow. You must apply for SSI and be turned down to qualify. When you are denied SSI, ask for a written proof of denial. Next, contact your county Child and Family Services (CFS) department and ask for a Medicaid worker. Schedule an appointment with this person to apply for a Katie Beckett waiver.
This appointment will be long, and the questions will be intrusive, so be prepared. You will need copious documentation, including:
- Your SSI rejection letter
- Your child's birth certificate and Social Security number
- Proof of income (check stubs or a CFS form filled out and signed by your employer, and possibly income tax forms)
- Names, addresses, and phone numbers of all physicians who have examined your child
- Bank account and safety deposit box numbers, and amounts in these accounts
- List of other assets and their value, including your house and car
- A DMA6 medical report and a physician referral form signed by the doctor who knows your child best (CFS will provide you with these forms)
If you have a caseworker with your county's Mental Health offices, or if you regularly work with someone at a Regional Center or in an Early Intervention program, this person may be able to help you navigate the SSI, Medicaid, and Katie Beckett waiver process.
If you have specific problems with accessing appropriate medical benefits under Medicaid, state health plans, or other public healthcare plans, your caseworker or an advocate from NAMI or similar groups may be able to help. If your problems are of a legal nature, such as outright refusal of services or discrimination, call your state Bar Association and ask for its pro bono (free legal help) referral service, or contact the National Association of Protection and Advocacy Systems in Washington, DC, (202) 408-9514.
You can also consult the Health Law Project at (800) 274-3258.
As of this printing, twelve states have their own children's health insurance plan, and seventeen more have applied to the federal Department of Health and Human Services (DHHS) to start one. These plans are called State Children's Insurance Plans (SCHIP), and may offer uninsured children the same or similar benefits as Medicaid does.
Most state plans make innovative use of state funding combined with federal Medicaid payments. They are intended to cover low-income residents, residents with disabilities, and people who have been refused coverage due to preexisting conditions.
For updated information about state programs, see NAMI's special SCHIP site at http://www.nami.org/youth/schip.htm.
In some areas, city or county health programs are available that include access to mental health services.
During the first few years after my diagnosis, I used county mental health services. Given my low level of income, I didn't have to pay much money for these services and they were very good. I was able to see the same therapist every month to talk about everything I was going through while coping with the illness, and then a psychiatrist would come into the session for about five minutes to prescribe lithium to me and discuss anything related strictly to the medication. --Troy, age 30 (diagnosed bipolar I disorder at age 17)
Coverage is a fine thing, but what happens when no one will accept you as a patient? This is the situation faced by millions of Americans who have government-provided healthcare. You may find yourself limited to using county health clinics or public hospitals, and to those private providers who are willing to work for cut-rate fees. Medicaid and its cousins pay healthcare providers less than private insurers do, and there's no law that says a given provider must take patients with public insurance.
This means that facilities may be run-down, understaffed, and hectic. In fact, the emergency rooms of some public hospitals are downright frightening on weekend nights! Familiarize yourself with all of the options covered by your public healthcare plan. You may have more choices than you are initially led to believe. In some cases you may have the option to join one or more HMO plans, receiving the same benefits as non-subsidized HMO members. Check with other recipients or local advocacy groups if you are offered this choice--some of these plans do a good job of caring for disabled clients, while others are not preferable to plain old Medicaid or state healthcare.
Sadly, there is also an "anti-welfare" attitude abroad amongst some healthcare workers, who may not know or care what financial and medical troubles drove your family to need public healthcare or income help. You shouldn't have to tolerate substandard or unbusinesslike treatment from providers. If it happens, ask your caseworker about complaint options.
While Canada, all Western European nations, and many other countries provide family support allowances to encourage one parent to stay home with young children, the US government has cut support even to single parents, and provides extraordinarily low allowances when they are available. This policy affects the parents of children with disabilities particularly harshly.
I had to stop work and go on welfare to get medications for Robert and myself because the cost is too high for a single parent. --Evelyn, mother of 14-year-old Robert (diagnosed bipolar I disorder and ADHD)
Between the 1950s and the 1980s, single, low-income parents of children with disabilities tended to receive Aid to Families with Dependent Children (AFDC, or "welfare") and SSI. When put together, income from these two programs permitted them to eke out a living. While they remained well below the poverty line, they could generally obtain housing and adequate food. For many of these families, the most important benefit of receiving public assistance was access to Medicaid, which came with AFDC as well as with SSI.
Welfare reform has changed this picture drastically. AFDC has been replaced by the Temporary Assistance for Needy Families (TANF) program, a system of short-term emergency supports. All states have now imposed stringent rules, such as limiting assistance to once in a lifetime, insisting that parents work for their grants, or forcing parents into job-training schemes geared toward a rapid transition to low-wage employment. Although most states have also added childcare services to their offerings to help parents receiving TANF grants transition to the workplace, affordable childcare slots for children and teens with mental illness are almost nonexistent. This leaves even the most determined low-income parent at a severe disadvantage.
Federal law permits exceptions to TANF regulations be made for some--but not all--parents caring for disabled children, and for parents who are themselves mentally ill. However, caseworkers are responsible for holding down the number of exemptions to 20 percent or less of their clients, even though as many as a third of families on welfare include either a mother or a child with a serious disability (see "Recent Studies of AFDC Recipients Estimate Need for Specialized Child Care" at http://www.welfare-policy.org/childdis.htm if you'd like to know more).
If you have a bipolar disorder or other handicap yourself and are parenting, TANF may work for you or against you. Some parents who have let their caseworker know about a personal mental problem have been exempted from certain regulations. Others have lost their children to the state. You should see a welfare rights organization or sympathetic social worker before making the decision to tell. They can help you ensure your children's security by approaching the issue correctly.
You can apply for TANF at your county's Child and Family Services department. The program is primarily for single parents, but two-parent families are eligible in some areas and under some circumstances. The amount of the monthly grant varies. It is determined by the county government, which administers TANF programs at the local level. Grants range from around $150 per month in some rural Southern counties to about $650 per month in expensive cities like San Francisco, where a small supplemental housing benefit is factored into the grant
You'll need to provide very complete documentation to get and retain benefits on the basis of needing to provide full-time home care for a child. You can expect to have an eligibility review at least every three months, during which all of your documents will be reviewed and you will be re-interviewed. Generally speaking, you cannot have savings or possessions worth over $1,000, although you may own a modest home and car. You may be forced to sell a late-model car and other valuables before you can receive benefits. Your AFDC grant may be reduced by the amount of other financial assistance you receive. If you find part-time work, your grant will also be reduced by this amount or a portion thereof--some states do have work incentive programs, however. Court-ordered child-support payments to AFDC recipients are paid to the county rather than directly to the parent, and your grant will be debited for these as well.
You may be eligible for food stamps, "commodities" (free food), and other benefits, such as job training, if you receive TANF. People leaving TANF programs may be eligible for certain short-term benefits, such as subsidized child care and continued health insurance.
If you need help in obtaining public assistance, contact a local welfare rights organization or advocacy group. For national information and referrals, contact the National Welfare Monitoring and Advocacy Partnership at firstname.lastname@example.org or on the Web at http://www.nwmap.org/index.htm.
Indirect financial help for your family
In the US, tax deductions have replaced direct financial assistance to the poor in many cases. Since these benefits are provided but once a year, they are less convenient, but families coping with the high cost of caring for a mentally ill child should take advantage of them.
One of the most important tax benefits is the federal income tax medical deduction. You can write off not only the direct cost of doctor's visits not covered by health insurance, but also health insurance co-pays and deductibles, out-of-pocket expenses for medications, travel costs related to medical care, and at least some expenses related to attending medical or disability conferences and classes. Self-employed people can deduct most of their health-insurance premiums.
Because medical deductions limit your federal tax liability, they will also reduce your state income taxes, if any (state taxes are usually based on taxable income figures taken from your federal form). Some states have additional tax benefits for the disabled. In Oregon, for example, each disabled child counts as two dependents.
Another important federal tax benefit is the Earned Income Credit (EIC) program. This benefit for the working poor can actually supplement your earnings with a tax rebate, not just a deduction. You can file for EIC on your federal 1040 tax form.
Mortgage interest is also tax-deductible, as most people are aware. Since your home is usually not considered an asset when determining eligibility for direct financial assistance, such as SSI, this makes home ownership particularly attractive to families who are providing care for a bipolar child, especially if the child's condition is severe enough that they can expect to continue this role into adulthood. Some banks and credit unions have special mortgage programs for low- and moderate-income families. Given the strong financial benefits of home ownership, including the opportunity to keep your housing costs from going up in the future, purchasing a house is very advisable.
Very low income families, including young adults with bipolar disorders who rely on SSI or fixed-income trusts, may be able to get additional help in reaching the goal of home ownership from organizations like Habitat for Humanity or Franciscan Enterprises. Mental health advocacy and service organizations have recently begun to push to increase the level of home ownership among mentally ill adults. In some cases the home can be part of a special trust that provides professional management services, preventing the adult from being conned out of it, selling it, or seriously damaging it during a period of more severe symptoms.