Date: February 15, 2011
We often say that the word “disability” means different things in different contexts. Disabilities can be physical in nature, cognitive in nature, 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:
Guardianship and Advance Directives:
In a recent newsletter we discussed one of New York’s guardianship statutes (Article 17-A of the Surrogate’s Court Procedure Act). “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 as we cautioned in our subsequent newsletter, 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 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. There are actually two different and separate guardianship proceedings available in New York State, the Article 17-A proceeding (discussed above), as well a proceeding that is brought under Article 81 of New York’s Metal Hygiene Law. Article 17A is most commonly used for individuals who were developmentally disabled from birth; Article 81 is more commonly used 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 the Article 81 proceeding is to “tailor” the guardianship to the specific needs of the individual, appointing a guardian to assist only in those areas where he needs assistance, and preserving his independence in those areas where he does not.
For individuals with developmental disabilities, either proceeding is available. But because the intent and objectives of each guardianship statute is different, the documentation required to “prove” disability in an Article 81 case is different than the proof required to prove disability in an Article 17-A case. To make a credible choice between the two proceedings, one has to understand how “disability” is defined for the purpose of each proceeding. 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” payments 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. New York’s Medicaid Buy-In program allows an individual with a disability to earn approximately $55,000 per year (in 2010) and maintain “disabled” status for the purpose of receiving various Medicaid -funded services. Participants in the Buy-In program work full-time, but 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, not only do many of our clients in the Buy-In program 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
For New York residents with mental retardation and developmental disabilities, the New York State Office of People with Developmental Disabilities (formerly the Office of Mental Retardation and Developmental Disabilities ) OPWDD approves services and oversees local service providers. Most of these providers are paid primarily with Medicaid dollars.
Yet Medicaid funding is actually the second step in a two step process. The first step is to obtain a certification from OPWDD that the level of disability is significant enough to warrant OPWDD-approved services. If OPWDD approves, the individual receives an authorization letter. That letter, in turn, is presented to the local department of social services, which will conduct a Medicaid eligibility assessment.
Many of our readers know that the OPWDD certification 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 Aspergers Syndrome, for example, have been particularly frustrated with this process.
Often clients facing a denial will say, “but my daughter is receiving special education services through the school district – how could OPWDD 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 services through OPWDD. Disability means different things in different contexts.
What do you mean she is no longer covered?
Another common dilemma faced by our clients 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 disabled adult children, 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.
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.
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