At certain points in their lives, some people with Huntington's's
are not able to work and must rely on benefits from private
and public disability programs. Although efforts have been made to streamline processes, applying for benefits-and ensuring
eligibility-can be complicated, time-consuming, and frustrating.
Two key points emphasized by advocates and benefits administrators alike:
1) do not throw away any potentially relevant paperwork
you receive from an employer, an insurer, a government agency, or an advocate on your behalf and
2) keep copies of everything that you submit.
Below are snapshots
of some of the main benefit programs for people with disabilities, including links to more in-depth information.
The programs discussed include: Social Security Disability Insurance
(SSDI), Supplemental Security Income (SSI), Medicare, State Health Insurance Counseling and Assistance Programs (SHIP), and
Medicaid.
Also discussed briefly is the Ticket to Work and Work Incentives Act
of 1999, a federal law designed to improve the ability of people with disabilities to join the workforce without losing important
medical benefits, and private-sector disability plans offered by employers.
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Professional Handbook SSA Pub 64-039 "Disability Evaluation
Under Social Security"
Care needs to be taken in applying for disability to properly document the inability to work.
It's not enough to be diagnosed with HD. The Social Security Administration publishes a guide used by its own staff
who determine disability. The February 2002 version of this book lists the following reasons for awarding permanent
disability:
"11.17 Degenerative disease not listed elsewhere, such as Huntington's chorea, Friedreich's ataxia,
and spino-cerebellar degen-eration. With:
A. Disorganization of motor function
as described in 11.04B or 11.15B; or
B. Chronic brain syndrome. Evaluate
under 12.02."
You should provide copies of the appropriate sections of
this Blue Book to your neurologist so that he can provide a letter for inclusion in your disability application that documents
these requirements. Your application for disability should show other evidence, such as letters from former employers
documenting that you can no longer work. |
Government Programs
There are a variety of government programs that provide cash on a monthly
basis for people with disabilities who have difficulty making ends meet. Restrictions abound and the monthly amount is often
barely sufficient to cover anything beyond the most basic expenses; however, efforts are under way in some states to implement
more comprehensive cost-of-living analyses in order to improve benefit amounts.
A federal government agency, the Social
Security Administration (SSA), offers a comprehensive and user-friendly information on the full range of disability benefits
it provides; it is available online at www.ssa.gov/dibplan/.
The medical requirements for disability payments are the same for all federal
programs and a person's disability is determined by the same process.
In general, you may be considered disabled under Social Security rules if:
- you cannot do the work that you did before
- the SSA decides that you cannot adjust to other work because of your medical conditions(s)
- and your disability lasts or is expected to last for at least one year or to result
in death.
One way to determine if a person is potentially eligible for any of the government's
programs for disabled people is to check out the Benefit Eligibility Screening Tool (BEST), operated by Social Security Online
at http://best.ssa.gov/. (Note: The BEST tool can be cumbersome to access and navigate itself. Often
a follow-up phone call with a government official is necessary to clarify results obtained through BEST.)
A. General Financial Assistance
The SSDI program is geared pri-marily toward those under age 65 who had fairly
substantial "on the books" employment records before leaving work because of a disability. The amount of the monthly benefit
it provides is based on work history. The federal govern-ment's Social Security Administration (SSA) administers the program.
For
more information on the specifics of SSDI, visit the SSA's Web site at www.ssa.gov. The agency operates a toll-free telephone number, 1-800-772-1213, for those who prefer to speak directly
to a Social Security claims representative. That number is also the one to call in order to apply for SSDI benefits.
The representative will ask specific questions about the disability and discuss
the required documents that must accompany an application. Probably the most important document is a letter of diagnosis
from a physician; other required documents may include a birth certificate or social security card.
Note: It can take
a few months for SSDI to kick in. During that period, applicants may be eligible for SSI (Supplemental Security Income) benefits
from the government.
In terms of health insurance, SSDI beneficiaries are automatically eligible for Medicare after
collecting SSDI benefits for 24 months. They may also be eligible for Medicaid-which provides similar, but not the exact same,
services -but they must submit a separate Medicaid application. For further information, visit ,the Centers for Medicare and
Medicaid Services (CMS) website www.cms.hhs.gov
2) SSI (Supplemental Security Income)
The government's SSI (Supplemental Security Income) program
also provides a monthly cash stipend to people with disabilities who need help meeting their basic needs for shelter, food,
and clothing.
It differs from SSDI in that it is based on financial
need only and generally applies to those who have extremely limited "on the books" work history. (Note: SSI is also available
to individuals who are waiting for their SSDI to start.)
Many people with disabilities consider SSI a double-edged
sword. On the one hand, it provides a guaranteed (although not remotely generous) monthly benefit; however, in order to be
eligible, one must have very few assets. For instance, under current rules a single person living alone cannot have total
assets worth more than $2,000 and cannot have unearned income of more than $638 a month. |
2) SSI (Supplemental Security Income) continued
With such restrictions, it's no small wonder that in order
to maintain eligibility many people have no choice but to refuse to accept payment for "on the books" work or spend much of
their time volunteering.
Visit the SSA's Web site at www.ssa.gov or call the toll-free number 1-800-772-1213 for more specific information on SSI, including eligibility
requirements
B. Health Care
A federal law, the Consolidated Omnibus Budget Reconciliation Act (COBRA), stipulates that
when an employee loses coverage under an employer-sponsored health plan, he or she must be allowed to elect to continue
coverage under that plan for a set period of time on a self-pay basis.
COBRA applies most frequently in
instances when an employee is laid off (for reasons other than "gross misconduct") or his or her hours are reduced. The law
also applies to the employee's dependents in the event of divorce, the employee's death, or certain other situations.
Generally,
employers are required to offer access to their health care plan for 18 months after the employee is terminated or his or
her hours are reduced. That period is extended to 29 months for an individual who is determined to be disabled under the Social
Security Administration (SSA) guidelines. Visit www.ssa.gov for more information about the specific guidelines.
The government-administered
Medicare program provides health care services for people aged 65 and older-and for many people with disabilities
who are younger than 65.
Visit the
http://www.cms.hhs.gov/ website for specific information and to determine eligibility. This Web
site is operated by the Centers for Medicare and Medicaid Services (CMS), or use the following toll-free telephone number:
1-800-MEDICARE (1-800-633-4227).
2) Medicare
SSDI beneficiaries
are automatically eligible for Medicare after collecting SSDI benefits for 24 months. They may also be eligible for Medicaid-which
provides similar, but not the exact same, services-but they must submit a separate Medicaid application. For further information,
visit www.cms.hhs.gov. Medicare
currently does not pay for prescription drugs.
State Health
Insurance Counseling and Assistance Programs (SHIP Programs)
For
Medicare recipients, every state has a program designed to help find the most appropriate insurance options for your specific
situation. See Medicare SHIP Programs for more information about what is available in your state. (Among the potentially useful
issues discussed at this Web site are Medigap policies, managed care [HMOs], and patient assistance programs operated by pharmaceutical
companies.
3)
Medicaid
Medicaid is a joint federal-state program that provides health care services primarily to low-income and needy
people. Among those potentially eligible for coverage are people with disabilities and those who receive federally assisted
income maintenance payments, such as Supplemental Security Income (SSI). Because state governments kick in a substantial portion
of Medicaid budgets, benefits vary widely around the country. Nearly all programs help pay for prescription drugs.
For
specific information and to determine eligibility, visit www.cms.hhs.gov, the Web site operated by the Centers for Medicare and Medicaid Services (CMS), or look up a toll-free
telephone number online www.hcfa.gov/medicaid/obs5.htm for the Medicaid administration in your area:
SSDI beneficiaries may be eligible for Medicaid-which
provides similar, but not the exact same, services as does Medicare-but they must submit a separate Medicaid application.
Go here www.cms.hhs.gov. for further information.
Medicaid Waiver Programs
Increasingly, States are expressing an interest in providing long-term care services in a managed care
environ-ment or using a limited pool of providers.
In addition to providing traditional long-term care State plan services (e.g., home health, personal
care, institutional services), many States are proposing to include non-traditional home and community-based "1915(c)-like"
services (e.g., homemaker services, adult day health services, respite care) in their managed care programs.
There is no authority under 1915(b) to cover individuals in a special eligibility category (the 42 CFR
435.217 group) who are only Medicaid eligible through a link to a 1915(c) waiver.
For these reasons, several States have opted to simultaneously utilize authorities of the 1915(b) and
1915(c) programs to provide a continuum of services to disabled and/or elderly populations. In essence, States use the 1915(b)
authority to limit freedom of choice, and use the 1915(c) authority to provide the home and community-based services and expand
Medicaid eligibility to the 435.217 group. Click here ->Map of State Waiver Programs and Demonstrations to obtain documents associated with pending and approved demonstrations and waiver programs.
Ticket
to Work and Work Incentives Act of 1999
The "Ticket to Work" legislation was designed to eliminate restrictions that did
not allow disabled people to work, even part-time, without losing crucial medical benefits such as Medicare or Medicaid. Often
the amount earned by working would not even equal the value of the lost benefits. As a result, people with disabilities have
long had one of the highest unemployment rates in the country-about 70 percent in 2000.
Implementation of the law
continues, often slowly, around the country. For more specific information on Ticket to Work, visit the Center for Medicare
and Medicaid Services (CMS) CMS's Ticket To Work website
Employer-Offered Disability Plans
Many employers offer short-term and/or long-term disability plans
that employees can choose to put money into while they are working. After leaving work because of disability (and keep in
mind that different plans have different eligibility require-ments as to what constitutes disability), qualified employees
receive a portion of their salary while they remain disabled.
Private-sector plans usually begin paying out within
a period of months after disability begins. That compares favorably with most government disability programs, which can take
a year or more to approve a disability claim and begin disbursing payment.
Some private plans pay a set amount regardless of what an insured
patient receives from Social Security, while other plans may offset the benefits they pay by whatever disability payments
the insured may receive from Social Security. |
