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Proposed Data Standard for
Disability Status |
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Proposed Data Standard for Disability
Status |
- Are you deaf or do you have serious difficulty
hearing?
- ____Yes
- ____No
- Are you blind or do you have serious difficulty seeing, even when
wearing glasses?
- ____Yes
- ____No
- Because of a physical, mental, or emotional condition, do you have
serious difficulty concentrating, remembering, or making decisions? (5
years old or older)
- ____Yes
- ____No
- Do you have serious difficulty walking or climbing stairs? (5 years
old or older)
- ____Yes
- ____No
- Do you have difficulty dressing or bathing? (5 years old or
older)
- ____Yes
- ____No
- Because of a physical, mental, or emotional condition, do you have
difficulty doing errands alone such as visiting a doctor's office or
shopping? (15 years older or older)
- ____Yes
- ____No
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HHS Rationale for Disability Data
Standard
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The six item set of questions used by on ACS and other
major surveys to characterize functional disability is proposed as the
standard for collecting population survey data on disability. The question
set was developed by a Federal interagency committee and reflects how
disability is conceptualized consistent with the International
Classification of Functioning, Disability, and Health. The question set
went through several rounds of cognitive and field testing and has been
adopted in most major federal data collection systems. An explanation of
the data standards for race, ethnicity, sex, primary language, and
disability may be found at http://minorityhealth.hhs.gov/templates/content.aspx?lvl=2&lvlid=208&id=9002#x
OMB has encouraged the
use of this question set when Federal agencies conduct national population
studies in order to promote a consistency in measurement and continuity in
the dialogue.
If you have any
questions, please feel free to contact Lew Golinker.
Lewis Golinker, Esq.
401
East State Street, Suite 300
Ithaca, NY 14850
607-277-7286
(v)
607-277-5239 (fax)
xxxxxx@xxxxxxxxxxxxxxxxxx
(e-mail)
xxxxxx@xxxxxxx (e-mail) |
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USSAAC
Response |
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Office of Minority Health Resource
Center
Attention: Affordable Care Act Section 4302 Data
Standard Comments
P.O. Box 37337
Washington, D.C. 20013-73337
Dear Sir or Madam:
The United States Society for Augmentative and
Alternative Communication (USSAAC) is the United States national chapter of
the International Society for AAC (ISAAC). USSAAC was created in 1986.
USSAAC's members include people with complex communication disabilities who
rely on Augmentative and Alternative Communication (AAC) interventions and
their family members, speech language pathologists and other healthcare
providers, educators, researchers, speech generating device manufacturers
and advocates.
USSAAC's mission is to ensure that people with complex
communication impairments have access to necessary health and education
services, including speech-language pathology services and the full range
of AAC interventions. USSAAC's advocacy has helped to expand access to
these services, including elimination of barriers to Medicaid and Medicare
funding of speech generating devices.
Demographic studies estimate the incidence of severe
speech and/or language impairment such that the person is unable to meet
daily communication needs using speech, writing, gesture, or sign language,
at between 0.1- 0.2 % of the general population. [1] Thus, a reasonable estimate is
that between 300,000-600,000 Americans require AAC interventions. People
with these impairment characteristics are a subset of the estimated 7.5
million Americans who have some difficulty communicating by voice and the
6-8 million Americans with language impairments.[2] In fact, people with AAC needs
are those with the most severe speech and language disabilities with
diagnoses that include, but are not limited to, cerebral palsy, autism,
stroke, amyotrophic lateral sclerosis, Down syndrome, multiple sclerosis,
traumatic brain injury.
Because people with complex
communication disabilities are an under-served population, it is essential
that they be recognized in government health-needs data collection efforts.
However, the HHS "Proposed Data Collection Standards for Race, Ethnicity,
Primary Language, Sex, and Disability Status Required by Section 4302 of
the Affordable Care Act" list of questions related to "disability" status
omits any mention of speech or language impairments as
disabilities.
For this reason, USSAAC
proposes that the list of questions related to "disability" status be
amended to include the following:
Do you have difficulty communicating because of serious speech and
language disabilities?
The text of this question
mirrors that of the existing disability-related questions on the proposed
data collection form.
Adding this question to
the form will correct a significant omission and enable people with complex
communication needs to protect their access to necessary health
services.
Please contact me if I
can provide any additional information.
Thank you.
Respectfully
submitted,
India Ochs,
President, United States
Society for
Augmentative and
Alternative Communication
[1] Perry, Reilly, Cotton, Bloomberg &
Johnson, (2004) A demographic survey of people who have a disability and
complex communication needs in Victoria, Australia, Asia-Pacific J.
Speech, Lan. Hearing, 9, 259-271; K. Bloomberg & H. Johnson, (1990)
A statewide demographic survey of people with severe communication
impairments, Augmentative and Alternative Communication, 2(1),
57-67.
[2] National Institute on Deafness and Other
Communication Disorders, http://www.nidcd.nih.gov/health/statistics/vsl.asp. |
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Regional Representation for
USSAAC |
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Region 1 New England
xxxxxx@xxxxxxxxxx
Vermont, New
Hampshire, Maine, Massachusetts, Connecticut, Rhode Island
Region
2 Northeastern xxxxxx@xxxxxxxxxx
New York, New
Jersey
Region 3 Mid-Atlantic xxxxxx@xxxxxxxxxx
Pennsylvania, West Virginia,
Virginia, Maryland, Washington DC, Delaware
Region 4 Eastern
Central xxxxxx@xxxxxxxxxx
Missouri, Tennessee, Kentucky,
Ohio, Michigan
Region 5 Southeastern xxxxxx@xxxxxxxxxx
Arkansas, Louisiana, South
Carolina, Florida, Mississippi, Alabama, Georgia, North
Carolina
Region 6 Great Lakes xxxxxx@xxxxxxxxxx
Illinois, Iowa, Wisconsin,
Minnesota, Indiana
Region 7 Midwestern xxxxxx@xxxxxxxxxx
North Dakota, Texas, South
Dakota, Wyoming, Nebraska, Montana, Kansas, Colorado, Arizona, New Mexico,
Oklahoma
Region 8 Western xxxxxx@xxxxxxxxxx
Washington, Nevada, Oregon, Idaho,
California, Alaska, Hawaii,
Utah | |