Alice Cogswell and Anne Sullivan Macy Act (H.R. 3535)
Named for the first deaf student to be formally educated in the U.S.A. and for Helen Keller’s beloved teacher, respectively, the Alice Cogswell and Anne Sullivan Macy Act will strengthen the Individuals with Disabilities Education Act to improve results for deaf, hard of hearing, blind, visually impaired, and deaf-blind children, including those with additional disabilities.
On September 17, 2015, a comprehensive Bill to reform the education of deaf, hard of hearing, blind, visually impaired, and deafblind students was introduced in the U.S. House of Representatives. Sponsored by Congressmen Matt Cartwright (D) and David McKinley (R), H.R. 3535, the Alice Cogswell and Anne Sullivan Macy Act, the bill will amend the Individuals with Disabilities Education Act to address the unique needs of these populations. This is truly a historic event.
The Act includes 3 sections. Title I addresses issues specific to the education of children who are deaf/hard of hearing, Title II addresses issues specific to the education of children who are blind/visually impaired, and Title III addresses issues specific to the education of children who are deafblind. Click Cogswell/Macy Act to read the full text of the Bill. TITLE III begins on page 40 of the Act and includes wording which:
Designates intervener services in the “related services” listing
Reflects the need for the recognition of and training for teachers of the deafblind
Adapts the federal definition of deafblindness
Requires each state to specifically address deafblind issues in the development of its state plan.
The Alice Cogswell and Anne Sullivan Macy bill now needs to gain the sponsorship of many more House members, and it needs to be introduced in the Senate. Please take a few moments to contact your Congressional members to ask them to sponsor this bill either by phone or email. You can find your state Senators by clicking here, and your Members of Congress by clicking here.
What the Cogswell Macy Act Means To Our Family
To put it simply, the Cogswell Macy Act means hope! It means hope for families of children with hearing loss, vision loss, and deafblindness!
‘‘(E) SERVING CHILDREN WITH DEAF-BLINDNESS—When a State classifies children by disability, the State, in complying with subsection (a), identifies, locates and evaluates children with concomitant vision and hearing losses who are, or may be, classified in a disability category other than deaf-blindness, meaning concomitant hearing and visual impairments, the combination of which causes severe communication and other developmental and educational needs that adversely affect a child’s educational performance (and including children who are deaf-blind with additional disabilities), and provides (without prejudice to such classification) special education and related services to such children, including such services determined appropriate based on proper evaluation as would be provided to children classified in the State as having deaf-blindness.’’
The reason I began my journey in advocacy is because Stephen’s hearing fluctuated from one test to the next. It seems he had shifted between the world of the deaf and the world of the hearing. The audiologists didn’t know what to make of the improvement. They had previously reported to us that his hearing loss was permanent. Sensorineural hearing loss is typically permanent. As parents, the lack of answers we received, late diagnosis, and delayed early intervention as a result of lengthy referral process, were a source of unending frustration.
It was as if Stephen was just expected to be “all better now.” From our experiences parenting Stephen the idea was just ludicrous. Stephen had suffered the developmental impact of a catastrophic childhood seizure disorder. He started having uncontrolled seizures at 5 months old. It was a serious and sometimes fatal condition known as Infantile Spasms (see our story.) We knew instinctively that our son still needed help to access the world around him. It’s been nearly 7 years since the improvement in Stephen’s hearing. Stephen remains non-verbal with limited language and communication skills.
If the Alice Cogswell and Anne Sullivan Macy Act existed when Stephen transitioned from Birth-To-Three into the local public school, the developmental impact of early loss would have been considered. Stephen would have been entitled to services as a deafblind child. Despite the fact that he had been classified under “developmental delay” and then “autism” and finally “multiple physical handicaps” before receiving the correct IEP disability classification as “deaf-blind.”
We would have received the services we so desperately needed for Stephen’s language and communication development and school readiness. Stephen would have had the services of an intervener, who could help address issues specific to combined vision and hearing loss. His behavior would not have been so misunderstood and so often blamed on autism. He might not be struggling with basic communication at the end of 4th grade and his future in 5th grade might not be so uncertain…