In Oakland on Monday, November 6, Nancy Eddy, Julie Rems Smario and myself (Linda Drattell) spoke on behalf of California residents who are deaf and have other disabilities at the first of three state-level public meetings sponsored by the California Department of Developmental Services (DDS)regarding DDS Reducing Purchase of Service Disparities. According to Nancy Eddy, both BEADHH board member and executive director of Deaf Plus Adult Community (DPAC), “The numbers that DDS uses to determine if there is a disparity of services between groups shows that regional center consumers who are deaf receive more than their share of services. That means [DPAC] cannot even apply for funding available to provide better/more services to our group… I’ve pressed for more detail on how the money is spent for deaf consumers but they always claim that their systems are not detailed enough to go deeper and truly understand the expenditures. At the same time, there is only one group home in our two counties that has accessible language.” The DDS intends to hold these meetings to consult with stakeholders, including consumers and families, advocates. Testimony was given by deaf and disabled consumers and family members, who criticized the DDS for failing to provide services, poorly communicating how to use the complicated DDS program, and lack of response from regional centers that are tasked with carrying out the DDS program. Nancy Eddy testified regarding the needs of the deaf and disabled population, the absence of services, the lack of available professional training in ASL for deaf staff at DPAC, and the need for a deaf group home and ASL training of existing group home staff to provide communication access for deaf and disabled group home residents. Julie Rems Smario, another BEADHH board member and President of California Association of the Deaf, reminded the panel that the Deaf Community is vibrant and has a culture and language that need to be respected. As BEADHH President, I asked for transparency regarding the data they provide – there was no explanation as to how they supported the various disabled populations, for example – and regarding their expenditures, and reminded the panel that under the ADA and Unruh they are required by law to provide services for everyone – they cannot assert that one disabled group has “used up” their allotted portion of their budget. I also stated that it was unacceptable that the panel had no idea why there were disparities between the groups they served (presented as ethnic populations only), and requested that one way to better study the problem was to record in-depth notes to reflect the testimonies they were hearing from the audience.
The following is Nancy Eddy’s testimony in its entirety to the DDS:
“Good morning. My name is Nancy Eddy. I’m a parent of a 31 yr. old daughter who is deaf and has developmental delays. I also am the director of a local vendorized program for adults who are deaf and have disabilities. For 30 years, I’ve been advocating in one way or another for this small, underserved group of regional center consumers.
I say ‘underserved’ but when DDS looks at the POS rates for deaf, this group is not included in those with disparities – purchase rates for services for deaf are not below average and are often on the high side. I’ve asked RCEB how this can be – where is the money going and for what kind of services – but haven’t received a response. Could it be the cost of ASL interpreters? Interpreters are not provided very often so it doesn’t seem like that should be the reason and other groups need translators as well. Could it be transportation? The program I run in Fremont has had consumers that come from as far as San Francisco, Richmond, Brentwood and Salinas so transportation is a factor but not for everyone. I’m also curious about how DDS counts consumers who are deaf, hard of hearing or deaf/blind. In 2015 I pulled numbers from DDS Facts & Stats and found that statewide the percentage of consumers with a diagnosis of hearing impairment was 5.89% of consumers; at RCEB it was 6.73%. However, RCEB cannot locate that number of consumers. That makes me question the validity of the DDS statistics.
The reality for consumers who are deaf is that most do not have access to communication – they are language deprived, neglected. Many learned some form of signed communication in their youth but, as adults, are placed in group homes with no signed communication. They go to day programs with minimal, at best, communication. They have fewer job placements in the community because they need job coaches who can communication with them. Others just stay home because of the lack of services in their local areas. And other consumers who are deaf were not given signed communication growing up so they are just considered non-verbal and frequently have behavior challenges.
Deaf Plus is the only provider of services in the entire Bay Area that provides accessible communication for consumers who are deaf and have behavior challenges! That’s why some commute such distances. Others just want accessible language and work opportunities. DPAC has only been open for 5 years. The change we see in consumers within a short time is astounding. They often come to us with low language and high behaviors. As they learn sign language and have a way to express themselves, their behaviors decrease markedly. They are able to join in activities and function well and feel included. Even minimal language is so much better than using ‘behaviors’ to communicate. In June, we opened a supported employment program and have already worked with 13 consumers in finding competitive jobs with signing job coaches. Several consumers who were already in the work force but had job coaches who could not communicate with them were transferred to us and are now more stable in their placements. Already, we have a waiting list.
There are few other programs that provide accessible communication to consumers who are deaf. Actually, RCEB is rich in resources compared to other regional centers in the Bay Area. And still there is nothing in Contra Costa County. Nothing in the SARC catchment area. I’m not aware of any programs on the Peninsula or in Marin County.
And yet, DDS does not consider services for the deaf to be a disparity! I’d love to open a program in Contra Costa or San Jose but without access to funding, it’s impossible. Group homes with fully accessible communication need to be developed specifically for consumers who are deaf, but there is no funding available for that either. The funding for disparity in services needs to be opened to provide services to the deaf.
My daughter has good communication in her apartment with supported living and attends DPAC with full communication and is in the process of searching for competitive employment with the help of a signing job coach. That is why I’m in this business. I want to see that for everyone who has communication needs. I’d also like to retire but I can’t do that until I’m sure that access will continue to be available for my daughter.”
Background and Related Law
The Americans With Disabilities Act (ADA)
The ADA regulations in 28 CFR, §35.149, Discrimination Prohibited, explain that qualified individuals with a disability may not be excluded from participation or denied benefits of a public entity’s services, programs or activities — nor be subject to discrimination — because a public’s entity’s facilities are inaccessible or unusable by individuals with disabilities. This means that the deaf and hard of hearing must be able to access the City’s and County’s services provided to others, regardless of cost.
Title II Statute:
Title II applies to state and local governments, and directs that no individual with a disability shall “be excluded from participation in or be denied the benefits of services, programs, or activities of a public entity, or be subjected to discrimination by any such entity.” 42 U.S.C. §§ 12131(1)(A), 12132.
Title II Regulations:
Title II directs that public entities “shall take appropriate steps to ensure that communications with applicants, participants, members of the public, and companions with disabilities are as effective as communications with others.” 28 C.F.R. § 35.160(a)(1).
Public entities must “furnish appropriate auxiliary aids and services where necessary to afford an individual with a disability an equal opportunity to participate in, and enjoy the benefits of, a service, program, or activity conducted by a public entity.” 28 C.F.R. § 35.160(b)(1).
Title III Statute:
Title III applies to private entities, and directs that “[n]o individual shall be discriminated against on the basis of disability in the full and equal enjoyment of the goods, services, facilities, privileges, advantages, or accommodations of any place of public accommodation.” 42 U.S.C. § 12182(a).
Effective communication is crucial in achieving equal access. Discrimination by public accommodations under Title III includes “a failure to take such steps as may be necessary to ensure that no individual with a disability is excluded, denied services, segregated or otherwise treated differently than other individuals because of the absence of auxiliary aids and services . . . . ” 42 U.S.C. § 12182(b)(2)(A)(iii).
A “public accommodation” includes businesses that are generally open to the public and that fall into one of 12 categories listed in the ADA, such as restaurants, movie theaters, schools, day care facilities, recreation facilities, and doctors’ offices. 28 C.F.R. § 36.104.
Title III Regulations:
Places of public accommodation must “furnish appropriate auxiliary aids and services where necessary to ensure effective communication with individuals with disabilities.” 28 C.F.R. § 36.303(c). Interpreting, closed captions, and hearing loops are all established auxiliary aids and service, and provide an “effective method of making aurally delivered information available to individuals who are deaf or hard of hearing.” The auxiliary aid used depends on the communication needs of the population served.
The Unruh Civil Rights Act
The Unruh Civil Rights Act (California Civil Code Section 51) protects individuals from discrimination by all business enterprises in California: these include housing and public accommodations, and makes discrimination illegal due to a person’s age, ancestry, color, disability, national origin, race, religion, sex and sexual orientation.