In New York State, not all "developmental disabilities" are equal

I was taken aback today when a parent indicated to me that her child was being reviewed for continued eligiblilty by New York State's Developmental Disabilities Service Office. This child has severe learning disabilities caused by a congenital neurological condition.

I was taught that a developmental disability was defined as a condition that was manifest in the developmental period (generally before age 22) and caused substantial limitation in functional ability. Qualifying conditions typically included cerebral palsy, autism, epilepsy, mental retardation, and learning disabilities. Along the way, I was aware that people who had traumatic brain injuries were also added to this list.

Wondering if there was some need for me to update my definition of developmental disabilities, I went to the NY State Office of Mental Retardation and Developmental Disabilities Website and found an interesting answer to my question: What are developmental disabilities? According to the website (in case you are not interested in looking for yourself), it states that "Developmental disabilities are a variety of conditions that become apparent during childhood and cause mental or physical limitation. These conditions include autism, cerebral palsy, epilepsy, mental retardation, and other neurological impairments."

I checked this definition against the federal law, the Developmental Disabilities Act of 2000. The federal government is a little more liberal, stating that developmental disabilities "means a severe, chronic disability of an individual that-
(i) is attributable to a mental or physical impairment or combination of mental and physical impairments;
(ii) is manifested before the individual attains age 22;
(iii) is likely to continue indefinitely;
(iv) results in substantial functional limitations in 3 or more of the following areas of major life activity:
(I) Self-care.
(II) Receptive and expressive language.
(III) Learning.
(IV) Mobility.
(V) Self-direction.
(VI) Capacity for independent living.
(VII) Economic self-sufficiency; and
(v) reflects the individual's need for a combination and sequence of special, interdisciplinary, or generic services, individualized supports, or other forms of assistance that are of lifelong or extended duration and are individually planned and coordinated.

The primary difference that I can see here is that New York State actually NAMES some conditions. I wasn't able to specifically identify old New York definitions to see if they had changed. Still, learning disabilities are not named as qualifying conditions, and instead are replaced by the more generic term "other neurological impairments."

Here we can see a little bit of dancing around with terminology - the definition of "other neurological impairments" states that "While thousands of people in New York State are thought to have some type of severe neurological impairment, many of these people learn to compensate for these disabilities and do very well in life. However, some people with neurological impairments may need specialized services similar to those available for other people with developmental disabilities."

The same is not said for the other named developmental disabilities. Why not?

When you look a little closer at disability determination processes, it turns out that an advisory guidelines memorandum from Commissioner Maul dated 8/10/2001 states that there are certain conditions that automatically trigger a Step 2 and Step 3 review - which include a more in depth look at an individual's eligibility. Trigger conditions include:
Asperger syndrome.
Pervasive developmental disorder - NOS
Traumatic brain injury (TBI).
Learning disability.
Attention deficit hyperactivity disorder.

Regarding these conditions, the guideline states that the Step 2 or Step 3 review is triggered when someone is "Applying for services for a person involving a disability condition which is associated with idiosyncratic or greatly varying substantiality of handicap or functional limitations, and in which the severity and breadth of functional limitations consistent with substantial handicap are not adequately assessed and documented."

This is odd, because cerebral palsy and epilepsy and other conditions not in this category are apparently exempted because their course is not as 'idiosyncratic.' This seems to be a very arbitrary distinction, particularly because there are people who have cerebral palsy or epilepsy who are much more functional than some people who have PDDNOS, Asperger's, or some learning disabilities. However, cerebral palsy or epilepsy don't automatically trigger a more in-depth review process for disability determination.

Of course there are other complex criteria to be considered - particularly focusing around adaptive behavior as measured on standardized instruments. But there is still a fundamental lack of fairness to have specific disability categories kicked into a more rigorous review process - just because.

On this issue I think the feds got it right. There is no need to 'name' the disabilities. There are criteria that need to be met, and those criteria are objective across disability categories. Developmental disability determinations should be completed with a primary focus on functional performance and whether the disability was manifest in the developmental period. This eliminates bias and creates an even playing field for people to qualify for resources.

Most importantly, we shouldn't have service-level professionals tell parents that they are 'scrambling' to find some reason why a child with a congenital neurological condition and learning disabilities should still qualify for DDSO services. "But he is not mentally retarded," the service coordinator told the parent.

This is how a guidance memo gets interpreted down on the playing field. In real life. Guidelines get interpreted, mythologies are created, and are transformed into policy practices. Then parents talk, and tell each other "don't even bother applying for services from the DDSO unless your child has mental retardation."

This qualifies as just another reason why we need to have street-level people feeding information back into the ivory tower.