A rose is a rose ... what it means to have a "disability".

We often say that the word "disability" means different things in different contexts. Disabilities can be physical in nature, cognitive, or some combination thereof. Some individuals with disabilities have guardians; some don't. Some receive means-tested government entitlements; some don't. Some work, others don't. Moreover, and depending on the nature of the disability, there are many different programs and services available to the individual, each with its own sets of eligibility rules and administrative infrastructure, each defining "disability" in a different way. It can be daunting even for the most seasoned advocates and professionals. Consider, for example, the following.

Guardianship and Advance Directives

"Guardianship" refers to a legal proceeding where an individual (a "guardian") is granted the authority to make property and personal decisions for someone who lacks the ability to do so for himself. But the decision to pursue guardianship is not always that simple, as not everyone with a "disability" needs a guardian. Many individuals with disabilities can make some (but not all) decisions, and they may have the ability to knowingly decide whom they would like to make decisions for them. In other words, they might be competent to sign a Power or Attorney or Health Care Proxy, thereby avoiding the need for a guardianship proceeding.

It actually gets a little more complicated. Most states distinguish between full and limited guardianship. A full (or plenary) guardianship is used for an individual who is mentally incapacitated and needs someone to make decisions for virtually every aspect of his or her life; it is similar to the authority a parent has over a young child. A limited guardianship, on the other hand, is more appropriate for an individual who retains capacity to make certain basic life decisions--such as knowing when and what to eat, how to care for minor health problems, and how to pay routine bills but who still needs someone to make decisions in all other matters.

Some states (such as New York) have two entirely separate guardianship proceedings available, depending upon the timing of the onset of the disability. One proceeding is intended for individuals who had developmental disabilities from birth and have never been mentally competent while the other is meant for individuals who were at one point fully competent, but are no longer, such as an elderly individual with Alzheimer's disease. The goal of this second proceeding is similar to that of a "limited" guardianship--that is, to "tailor" the guardianship to the specific needs of the individual, appointing a guardian to assist only in those areas where she needs assistance, and preserving her independence in those areas where she does not.

But in any guardianship proceeding, one has to understand how "disability" is defined for the purpose of the proceeding. In other words, in guardianship practice disability means different things in different contexts.

What Do You Mean He Has a Job?

The relationship between disability and employment is particularly challenging. Many individuals with disabilities collect Social Security Disability or Supplemental Security Income payments. In order to establish eligibility for these programs, an applicant must prove that he has a medically determinable disabling condition and that, as a result of the condition, he is unable to secure employment. Phrased differently (and in the language of the Social Security Act), his disability prevents him from engaging in "substantial gainful activity" sufficient to generate a living wage. In other words, these two benefit programs define "disability" in terms of an inability to work. For most, that is a pretty easy concept to understand.

Yet there are different "work incentive" programs within the Social Security and Medicaid systems. In fact, one of these programs allows an individual with a disability to preserve his status as "disabled" while engaging in full-time employment. Many states have a Medicaid buy-in program allowing an individual with a disability to maintain "disabled" status for the purpose of receiving various Medicaid-funded services even while working full-time and earning considerably more than the monthly Social Security disability insurance ceiling amount ($940 in 2008). The "countable" asset ceiling for this program is higher than the typical $2,000 limit for an individual receiving Medicaid. Participants in this buy-in program may still receive those services more commonly associated with those who have more profound disabilities--service coordination, residential habilitation, and other Medicaid-funded supports. In fact, many participants in buy-in programs work full-time, but they own homes, they drive, and are married. Yet they are still "disabled" for the purposes of this particular Medicaid program. This is a more difficult concept to grasp unless you remember that disability means different things in different contexts.

The (Holy?) Grail: Waiver Eligibility

Most states also have an office for approving services and overseeing local service providers for residents with mental health, mental retardation and developmental disabilities. In many cases, Medicaid eligibility is the gateway to accessing these services, as most of these providers are paid primarily with Medicaid dollars.

Yet, in some states, Medicaid funding is actually the second step in a two-step process, with the first step being to obtain a determination from the state MH/MR agency that the level of disability is significant enough to warrant state-approved services. Once that has been done, the local department of social services then conducts a Medicaid eligibility assessment.

In many cases across the country, this initial determination process has become more difficult in recent years, with the agency often denying eligibility for those who are at the higher end of the disability spectrum. Individuals diagnosed with Asperger syndrome, for example, have been particularly frustrated with this process.

Often parents of such individuals facing a denial will say, "But my daughter is receiving special education services through the school district. How could the state MH/MR agency say that she is not disabled?!" That may very well be true, but the test to determine eligibility for special education services is a different test than the test to determine eligibility for MH/MR services. Disability means different things in different contexts.

What Do You Mean She is No Longer Covered?

Another common dilemma involves children of working parents who are faced with the loss of coverage under a working parent's primary health insurance policy. Many of these health insurance policies agree to provide medical coverage to adult children with disabilities; whereas, coverage is not available to adult children without disabilities.

The problem in these cases is that disability is defined in the health insurance contract itself. What one company may accept as proof of disability may be different than what another company may accept so when the working parent changes jobs or the company for which she works changes health insurance plans, there is no guarantee that the new company will agree to continue carrying the child with the disability. And our clients will say, "But she is participating in the Medicaid buy-in program, which requires a finding of 'disability'!" That may be so, but the buy-in program is using an entirely different standard for determining disability than the health insurance plan administrator. Disability means different things in different contexts.

The Importance of the Big Picture

When we conduct consultations with clients on special needs issues, we always begin with a discussion of the nature of the disability, types of services and entitlements the individual is receiving, and any other certifications or finding of disability. Not only do answers to those questions help introduce us to the individual, but they also provide a context for many of the other recommendations that we might make: the type of trust that we might draft, the courts where our documents might be reviewed, and the agencies that might be involved in that individual's long-term care and support. Without that information, we simply cannot give credible and thorough advice.

So the next time you are meeting with a professional who casually refers to your family member with a disability as "disabled" without any further clarification, be on guard. Disability means different things in different contexts, and depending on the context of the advice you are seeking, that label is rarely enough.

Edward V. Wilcenski is an attorney with Jones & Wilcenski, practicing in Clifton Park, New York (just north of Albany), and the proud brother of a man with developmental disabilities. Mr. Wilcenski has written and lectured extensively on special needs planning and elder law issues. He is a Trustee of the NYSARC Pooled Trust and has been actively involved in the disability advocacy community since beginning his law practice. He is also a member and past-President of the Special Needs Alliance, a national, non-profit organization committed to helping individuals with disabilities, their families, and the professionals who represent them. Contact information for a member in your state can be obtained by calling toll-free 877-572-8472 or by visiting www.specialneedsalliance.org.