The following excerpt is taken from Chapter
of Pervasive Developmental Disorders: Finding a Diagnosis and Getting
Help by Mitzi Waltz, copyright 1999 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.
Most people dealing with PDDs have plenty of practice when it comes to
squeezing a buck. Some, however, are hard put to find a dollar to squeeze.
Parents with challenging children and adults with serious difficulties can have
trouble securing gainful employment.
There are some programs available that may provide you or your family with
direct financial support. The checks will be small, but with careful planning
they may allow you to give your child the gift of a home-based intensive
program or allow you time to develop a career that meets your needs.
The US stands alone in the civilized world as the only country that would
rather pay strangers or an institution to care for a child than provide support
for parents to do so themselves. While all Western European nations (and many
others) provide family support allowances to encourage one parent to stay home
with all young children, the US government has cut support even to single
parents, and provides extraordinarily low allowances when they are
This policy affects the parents of children with disabilities particularly
Until recently, single, low-income parents of children with disabilities
tended to receive Aid to Families with Dependent Children (AFDC,
"welfare") and Social Security Income (SSI). When put together,
income from these two programs permitted them to eke out a living well below
the poverty line, but with some hope of obtaining adequate housing and food.
For many of these families, the most important benefit was access to
healthcare, as government health insurance (Medicaid) comes with both AFDC and
Welfare reform has changed this picture drastically. Many states have
reconfigured AFDC as a short-term emergency support program. Most states have
imposed stringent limits on AFDC programs, 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. In some areas, exceptions are still made for single parents caring
for disabled children, and AFDC caseworkers may be allowed a certain degree of
If you have a pervasive developmental disorder or other handicap and are
parenting and receiving AFDC, this may work for you or against you. Some
parents who have let their caseworker know about a personal neurological
problem have been exempted from certain regulations. Others have lost their
children. 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 AFDC 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 AFDC 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 AFDC
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 home and a modest vehicle. You may be
forced to sell a car or 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.
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
You may be eligible for food stamps, "commodities" (free food),
and other benefits, such as job training, if you receive AFDC. People leaving
AFDC may be eligible for certain short-term benefits, such as subsidized
childcare and continued health insurance.
SSI is a federal program that provides a small monthly stipend for children
and adults with disabilities that cause marked and severe functional
limitations. Benefits range from around $300 to $400 per month for children or
for adults living in another person's household to over $600 per month. More
importantly for many, SSI recipients are also eligible for Medicaid, a federal
health-insurance plan. As with AFDC, your assets and income from other sources
will have to be limited, which can bring stress of its own as parents are
forced to "spend down" any savings and let careers slide to become or
Staying able to get SSI and Medicaid has meant my husband could not get a
better job because the pay would knock us out of contention for Medicaid. We
don't care about the SSI, we just need Medicaid for therapy and vision
coverage. --Holly, mother of three-year-old Max (diagnosed PDD-NOS and apraxia
Getting SSI may be one of the most difficult things you'll ever do. You
apply at your nearest Social Security office, which can provide you with the
paperwork and a current instruction book. You can also do a pre-eligibility
screen over the phone (call the national Social Security hotline at
800-772-1213). The application form is extremely long, and requires copious
documentation. SSI caseworkers and medical examiners seem to thrive on placing
roadblocks in your way.
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 you or your child is faking a disability--and your
impression may be right. The Social Security department will order an
Individualized Functional Assessment (IFA), which may include seeing more
doctors as well as a review of your medical documentation. Your child may be
interviewed and observed by a psychiatrist or medical doctor 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, wheelchairs, and other
If you need help with SSI (or, for that matter, with AFDC if you are
applying primarily because of your own or your child's special needs), contact
a disability advocacy agency (see Appendix B, Support and Advocacy).
This agency can help you through the application process, and most can provide
legal assistance if you need to appeal. Additional information about the
program is available online (for adults or general information, www.ssa.gov/odhome.
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. However, a
special income-limit waiver is available to help families who have income but
whose children have expensive medical needs. See Chapter 8, Insurance,
for information on the waiver process.
Some states, large cities, private agencies, and Native American tribes also
have income support programs. You may be eligible for one of these. A county
social worker or tribal official should be able to help you find out if you
We receive assistance from a United Way program and some grant funds from the
state Department of Mental Retardation. --Charlotte, mother of four-year-old
Rory (diagnosed PDD-NOS)
Welfare is available in Canada for people with disabilities, single parents,
and unemployed adults with or without children. The amount of the monthly
payment is set at the provincial level. The disability payment varies from a
low of about $580 per month in poor provinces like New Brunswick to around $800
per month in more expensive Ontario and British Columbia. Under the Canadian
system, payments to parents caring for children, single or otherwise, are
higher than those for disabled adults.
To apply for state welfare benefits, visit your nearest Ministry or
Department of Social Services. For disability benefits, regulations vary by
state. Generally speaking, however, you must be eighteen years of age or older
and require, as a direct result of a severe mental or physical impairment:
- Extensive assistance or supervision in order to perform daily living tasks
within a reasonable time, or
- Unusual and continuous monthly expenditures for transportation, special
diets, or other unusual but essential and continuous needs, and
- Have confirmation from a medical practitioner that the impairment exists
and will likely continue for at least two years or longer, or that it is likely
to continue for at least one year and then recur.
There are limits on the amount and kinds of savings and other property that
a person or family receiving benefits can have.
As in the US, welfare reform is a growing trend in Canada. Some states have
introduced mandatory workfare programs for single adults and for some parents
on welfare. These provisions generally do not apply to people receiving
disability benefits, and parents caring for disabled children may be able to
have welfare-to-work requirements waived or deferred.
Canadians who are denied benefits or who have other problems with the
benefits agency can appeal its decisions to an independent tribunal.
Some assistance for people with disabilities may also be available at the
federal level, or from First Nations (Native Canadian) agencies.
Other direct and indirect income assistance is available, such as subsidized
travel and tax benefits. For example, college students with permanent
disabilities can have their student loans forgiven, and are also eligible for
special grants to pay for a note-taker, transportation, and other
In the UK, people with disabilities have access to three major types of
direct state benefits. You can apply for these programs at your local Benefits
The Disability Living Allowance (DLA) is for adults or children with a
disability. Parents or carers can apply on behalf of a child. Payment ranges
from 15 to 35 pounds per week. The DLA forms are relatively complex, so, if
possible, find an experienced disability advocate to help you fill them out.
Some autism support groups have DLA experts on staff, as may your local
council. Adults may be able to do some paid work while receiving DLA.
Parents and others caring for a child who receives DLA can apply for the
Attendants Allowance (also called the Carers Allowance) program as well.
Any person over five years old who receives DLA can also get a Mobility
Allowance, a small sum of money to help them get to appointments and meet
general transportation needs.
Your local council may also have its own benefits scheme. These may be
direct payments, such as a supplemental housing benefit or tax offsets. A
number of supported work schemes are also available for people with
disabilities and adults receiving other forms of public assistance. In some
cases, these programs are mandatory.
Students pursuing a college degree may find themselves in a
"Catch-22" situation: on some occasions benefits officers have
decided that, if they are well enough to go to college, they're well enough to
work, and have canceled their benefits. You can appeal these and other
unfavorable decisions to a Social Security Appeals Tribunal.
See the report at www.ahead.ie/grants/grants.html#toc for special
information about disability benefits in Northern Ireland.
Disability Allowance and Disability Benefit are available in Ireland, but
are far from generous. Both are administered via the Department of Social
Welfare. Disabled students can continue to receive these benefits while
attending third level courses, although they may lose other types of public
assistance, such as rent allowance.
Maintenance Grant (a general benefit for poor families) is not affected by
Supported work schemes are available, although your earnings may make you
lose your disability benefits. The exception is work that the local welfare
officer agrees is "rehabilitative" in nature.
A number of scholarship and grant programs are available to assist students
with disabilities. See the report at www.ahead.ie/grants/grants.html#toc for more
A variety of income support programs are available to Australian citizens,
including direct financial assistance for adults with disabilities, parents
caring for children with disabilities, single parents, unemployed single
adults, youth and students. Programs related specifically to disabled citizens
and their families include:
- Disability Support Pension
- Related Wife Pension
- Sickness Allowance
- Mobility Allowance
- Carer Payment
- Child Disability Allowance
Employment programs for people with disabilities are many and varied,
including the Supported Wage System (SWS), which brings the earnings of
disabled workers in sheltered workshops or other types of supported or low-wage
employment closer to the livability range.
Indirect benefits may also be available under the Disability Services Act in
the areas of education, work, recreation, and more.
To apply for benefits or disability services, contact your local Department
of Family and Community Services.
Direct benefits in New Zealand are similar to those provided in Australia,
although the payments have historically been much lower. Domestic Purposes
Benefit is for single parents. There are also a number of additional services
available to the disabled and their carers, including training schemes,
supported employment, and recreational assistance. The social safety net in New
Zealand is currently being revamped, but services for people with disabilities
are actually expected to expand.
To apply for benefits or services, contact your local Ministry of Social
Welfare office, which runs the Income Support program. If you need help with
paperwork or appeals, Beneficiary Advisory Services (http://canterbury.cyberplace.org.nz/community/bas.html)
in Christchurch provides assistance and advocacy, as do a number of disability
advocacy groups, particularly the information clearinghouse Disability
Information Service (http://canterbury.cyberplace.co.nz/community/dis.html).
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 disability care
should take advantage of them.
One of the most important tax benefits is the medical deduction available on
your federal tax forms. You can write off not only the direct cost of doctors'
visits not covered by health insurance, but also your insurance co-payments and
deductible, and out-of-pocket expenses for medications, medical devices,
in-home healthcare assistants (presumably including ABA therapists), travel
costs related to medical care, and at least some expenses related to attending
medical or disability conferences and classes. Special deductions for
health-insurance premiums are available for self-employed people.
Because medical deductions limit your federal tax liability, they will also
reduce your state income taxes (state taxes are usually based on taxable income
figures from your federal form). Some states have additional tax-time benefits
for the disabled. In Oregon, for example, each disabled child counts as two
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.
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, this makes home ownership particularly attractive
to disabled adults and to families who expect to provide care for a child with
a PDD 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 adults with PDDs 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
Low-income patients may be able to get their medications for free just by
providing documentation to charitable programs run by pharmaceutical companies.
In the US, the Pharmaceutical Manufacturers Association publishes a directory
of indigent programs. Doctors can get a copy of the PMA's official guide by
calling (800) PMA-INFO. Alternatively, you or your doctor can call the company
that makes your medication directly to find out about its indigent patient
Most of these programs require that you have no insurance coverage for
outpatient prescription drugs, that purchasing the medication at its retail
price would be a hardship for you due to your income and/or expenses, and that
you do not qualify for a government or third-party program that can pay for the
Another source for free medications is your physician's sample cabinet. All
you have to do is ask, and hope that the pharmaceutical representative has paid
a recent visit. Samples can help tide you over rough financial patches, but you
can't rely on getting them monthly.
In some cases, you can reduce the cost of your monthly medication bill by
using a mail-order or online pharmacy (see the section "Mail-order
medications," later in this chapter).
Don't forget, adults with PDDs, children with PDDs, and sometimes, by
extension, their families may be eligible for a variety of discounts and
special access programs. For example, the US National Parks Service offers a
lifelong pass that gives disabled individuals free entry to all national parks,
as well as half-price camping privileges. If the recipient is a child, her
family also gets the discount. Disneyland, Disneyworld, and many other theme
parks have special perks for people with disabilities, such as not having to
wait in line for attractions.
There are a number of programs around the world that help disabled people
get access to computers and the Internet. One that offers free
computers is Minneapolis, Minnesota-based DRAGnet. You can reach them at (612)
378-9796, fax (612) 378-9794, email@example.com.
If you need medical assistance in a location far from home but can't afford
the cost of a flight or hotel, here are some resources that may be able to help
in the US or Canada:
Similar corporate programs may be available in Europe, Australia, and New
Zealand. Contact the public relations office of your national airline to find
out more. You may also be eligible for an emergency travel grant from a social
services agency to cover these needs.