NAADD

All the recommendations were, in fact, implemented. Janet Dickinson, who had served on the Task Force on Alcoholism and the Hearing Impaired as the DOA representative, was hired as the first Project Specialist on Deafness and Disabilities. She remained in that position after the divisions merged into the Division of Addiction Services (DAS).

Dickinson's first job was to implement the three remaining recommendations. Initial funding was granted to the following agencies to provide outpatient services: 1) Center for Family Services (CFS), then known as Reality House, and 2) the University of Medicine and Dentistry of NJ-University Behavioral HealthCare. In subsequent years, Marie Katzenbach School for the Deaf (MKSD)'s Halfway Home Project was funded. The Division on Deaf and Hard of Hearing was granted funds to oversee the provision of interpreters for 12-step meetings. In terms of prevention programming, Dickinson worked with Drug Free Schools Program staff at the Department of Education to ensure that those funds were used for deaf students.

As DOA undertook more initiatives to serve the disability population, Dickinson's responsibilities subsequently increased. She was grants manager for the first disability-related projects, Signs of Sobriety and the New Jersey Coalition on Disabilities, Alcoholism and Drug Abuse, as well as serving as the DAS agency representative to the Coalition and other disability statewide committees and agencies. After the Americans with Disabilities Act (ADA) was passed in 1990, Dickinson became a certified Barrier Free Advocate and conducted training for addictions prevention and treatment providers, including how to work with individuals who are deaf and hard of hearing. Dickinson also wrote the initial ADA Compliance Plan for the Division of Addiction Services.

New Jersey Coalition on Disabilities, Alcoholism and Drug Abuse

Susan Turner, a woman with a physical disability, was working in New Jersey as a social worker in a mental health agency in the early eighties. She had moved to New Jersey from New York, having worked in a variety of disability service agencies including the Independent Living Center in Yonkers and United Cerebral Palsy, assisting persons with mental retardation to transition into the community, through group homes, sheltered employment, etc. Since the beginning of her career as a social worker, Turner had recognized the problem of substance abuse among her clients with disabilities, from persons who had acquired their spinal cord injuries while using, to persons with dual diagnosis issues and persons with mental retardation who socialized in bars in an attempt to integrate into their communities. "Drinking is a common way to transition into the community. When one is uncomfortable in a social setting, going to a bar is easy. When you're drunk, everyone acts the same." In New York, when Turner had outreached to local substance abuse agencies to identify services for her clients, she found that although none were equipped to serve persons with disabilities, most were interested in learning how.

In New Jersey, Turner started a support group for persons with post polio. Her co-facilitator was Ray Jayco, a businessman in recovery. Turner was interested in replicating her efforts in New York to improve substance abuse services for persons with disabilities in the Garden State. She asked Jayco if he would join with her in this venture. She reasoned that having a person in recovery by her side would add credibility and additional expertise as she approached substance abuse agencies. Together, Turner and Jayco formed the New Jersey Coalition on Disabilities, Alcoholism and Drug Abuse. The Coalition was initially formed as an ad hoc group of service providers in the disability and alcohol and drug fields.

The Coalition was cross-disability from its inception, addressing issues pertaining to all disability groups-physical, deaf/hard of hearing, developmental, cognitive disabilities, blind and chronic illnesses.

Turner states the Coalition's long-range goals were twofold:

The Coalition met its goals through education and training in various venues, including

In the early 1980's Debra Maslansky moved to New Jersey from New York where she had worked as a special educator and rehabilitation counselor. In New Jersey she was employed at the ARC (previously the Association of Retarded Citizens) as the Director of Advocacy Services. In this capacity, she conducted trainings on numerous issues, including fetal alcohol syndrome. This topic sparked her interest in the connection between disability and substance abuse. In the late 1980's she began attending the Coalition's monthly meetings. She was impressed with the group and found it to be very organized with a strong committee structure. She quickly joined the Board of Directors and headed up the Education Committee as Chair. Maslansky began conducting trainings and speaking at statewide conferences on the issue of substance abuse and disability. Maslansky's supervisor, the Executive Director of the ARC, recognized the relevance and allowed her to participate fully in the Coalition.

In addition to community networking and training, the Coalition also took steps to raise awareness of the issue among high-level administrators. In 1989, their efforts paid off and Riley Regan, the Director of the Division on Alcoholism granted the Coalition $30,000 to provide information and referral services. By that time, the Coalition had incorporated as a non-profit and received the money directly.

In 1993, the group changed its name from the New Jersey Coalition on Disabilities, Alcoholism and Drug Abuse to the New Jersey Coalition on Disabilities and Addictions. The change was made to match the state agency's new identity. The Department of Alcoholism and Drug Abuse had changed its name to the Division of Addiction Services (DAS) to expand its focus and include issues like gambling, nicotine, etc.

In 1993, the Division of Addiction Services funded the Coalition to create a statewide coordinator position and Debra Maslansky assumed that role for the next seven years. The organization was housed in a local chapter of the NCADD National Council on Alcohol and Drug Dependency (NCADD) in Monmouth County. For the first grant year in 1989, the Coalition kept its identity as an autonomous organization. But maintaining status as an independent agency proved to be too costly and complex, requiring a yearly audit, bookkeeping system, personnel policies, etc. Subsequently, it gave up its non-profit status and became a project of the NCADD of Monmouth County. Later, NCADD of Monmouth County changed its name to Substance Abuse Resources, then Prevention First.

The Coalition continued its work, creating and supporting regional task forces, providing information and referral and conducting statewide conferences and presentations. In 1995, the Coalition conducted a survey of alcohol and drug treatment providers to gauge their level of accessibility. Based on these results, the Coalition was able to convince the DAS Assistant Commissioner, Terrence O'Connor to incorporate accessibility information in the state directory of treatment programs. In 1998, the Coalition was able to provide each of the 18 NCADD county affiliates a $3500 mini-grant to work on a local substance abuse project related to a disability issue. Projects ranged from raising awareness about general disability issues to providing educational seminars on issues linking learning disabilities and risk factors for substance abuse to educating pregnant women about preventing developmental disabilities and fetal alcohol syndrome.

John Hulick Working the Legislative Angle

Around the same time the New Jersey Coalition on Disabilities, Alcoholism and Drug Abuse Coalition was established, another advocacy effort was beginning.

John Hulick approached this problem as a self-proclaimed advocate. After attending for six weeks, he left law school and was sitting in a 12-step meeting. It was 1987 and he was in New Jersey. A deaf man was there as well, his mother trying to interpret what was going on with her limited knowledge of sign language. Hulick decided to help the man. First, he became his sponsor, then he placed upwards of sixty calls around the state trying to find services for deaf persons. Each time, he was told, "we know this is a problem, but we have nothing for you." The counties told him it was the state's responsibility and the state claimed it was the counties' problem.

News spread quickly in the deaf community that someone was trying to help deaf alcoholics. Soon, three other deaf men began attending the meetings, one of them became Hulick's sign language teacher. Hulick began with the alphabet, then learned sign language, becoming known as "sign language John," and interpreting, ad hoc at meetings.

With is background in public policy, Hulick's immediate inclination was to solve the access problem legislatively. These were publicly funded services and there needed to be some accountability somewhere. He identified Senator John Ewing (R-Somerset) as someone sympathetic because of his interest in deaf education as well as his track record of sponsoring progressive substance abuse legislation. Senator Ewing viewed substance abuse as a disease that can destroy families and ruin lives. He had seen firsthand the impact substance abuse had on an aide's family years before. It didn't take much explanation for him to understand that substance abuse is "a disease that affects all humans, disabled or not."

Hulick met with Ewing and explained the problem. Ewing recalls that Hulick "brought to his attention that disabled addicts and alcoholics are not treated the same as [non-disabled] substance abusers, yet many people with disabilities have substance abuse problems" and "John really pushed me to do something about it." Ewing called Riley Regan, Director of the Division of Alcoholism, with whom he had a close personal friendship based on his respect for the obstacles Regan had overcome in relation to his own alcoholism. Ewing told Regan, "you've got to do something for this guy." And Regan did.

In 1988, Hulick founded Signs of Sobriety and DOA granted the agency $30,000 start-up funding in September 1989. Initially, Signs of Sobriety filled the role that Hulick identified as the most crucial-an information and referral source for deaf and hard of hearing persons seeking substance abuse services. Hulick wanted to fill the gap that he had encountered and wanted to save others from the daunting experience of making scores of phone calls that led nowhere.

Legislation That Failed to do the Job

In the late 1980s and early 1990's, two pieces of legislation mandated the inclusion of accessible substance abuse programming for people with disabilities. One was spearheaded by Senator Ewing and John Hulick in New Jersey, the other was national in scope. Neither proved effective in addressing the need.

New Jersey Senate Bill 1891

In 1989, Senator Ewing sponsored legislation that would establish the New Jersey's Governor's Council on Alcoholism and Drug Abuse, a Division on Drug Abuse, and an Alliance to Prevent Alcoholism and Drug Abuse. Among other objectives, this legislation amended an existing county-based planning process. Hulick worked with Ewing to ensure that "the disabled" was identified as a population needing special attention in county-based alcohol and drug abuse plans that were to be submitted to the state. Hulick had found that counties claimed they would serve the population if only they were able to plan and allocate funding appropriately. Therefore, the legislation sought to give counties an opportunity to plan for disability specific substance abuse services-to conduct needs assessments on the potential need and develop county-based strategies to meet those needs. Unfortunately, very few of the county plans reflected these changes, and no changes in services were implemented that benefited people with disabilities.

The Americans with Disabilities Act

The most comprehensive disability civil rights legislation to date is the Americans with Disabilities Act of 1990. Under Title II of the ADA, each government entity is obligated to conduct a self-evaluation of all publicly funded programs and services, including those related to substance abuse, and develop a transition plan for the removal of architectural barriers. In New Jersey this meant that the state, counties and cities should have been working toward full compliance throughout the 1990's. Advocates believed the ADA was having only limited impact on services. Statewide compliance was slow and there were still great, unmet needs. Terrence O'Connor, DAS Assistant Commissioner summarized the dilemma: "With all of the substance abuse treatment field's competing needs and priorities, it is a monumental challenge to modify existing services. And, even then, there will always be a need for discrete services for certain sub-populations, such as the deaf."

Why a Set Aside was the Solution:

Opinions about set asides differ. Legislators can use them to ensure that public monies are meeting constituents' needs. Administrators find them a problem because they constrain their flexibility in operating programs.

Advocates are split on the issue. Some feel that, as was demonstrated by special education policy, providing separate services is a way to segregate people with disabilities and deny them access to services with more substantial funding. On the other hand, some advocates feel that "earmarked" funding is the only way to guarantee access.

III. Setting the Stage: Advocacy effort

Prior to legislative attempts for a set-aside, John Hulick and Senator Ewing made one attempt to include disability into another piece of legislation. In February 1989, Senator Ewing introduced S2786 of 1988-1989, a bill that would increase wholesale tax on alcoholic beverages. A percentage of the tax would be set aside for alcohol education and treatment. Hulick made sure that a percentage of the revenue would be used to establish such programming for persons with disabilities. The legislation passed through the Senate, but died in the Assembly. At the time, the Speaker of the Assembly was running for Governor and didn't want to support a tax increase.

About a year later, Hulick became aware of legislation that established a substance abuse program for senior citizens. He thought if a program could be proposed for seniors, why not the disability population? Hulick approached Senator Ewing with the idea.

Hulick worked with Senator Ewing for the next four years, trying to get a set-aside of funding for disability specific substance abuse programming. Ewing introduced several iterations of the legislation before the final one was signed into law in 1996. The initial versions are listed below. All previous versions of the legislation died in committee.

Although funding sources and amounts changed, the essential legislation was the same. It is unclear how the $200,000 figure was derived.

Nothing further happened with the bill until 1994. At that time, Hulick resigned as Director of Signs of Sobriety. Although he found the direct service work gratifying, the crisis management aspect was draining and he craved more advocacy-related work. When he applied for the position of Director of Public Policy at the statewide NCADD, he thought he had "died and gone to heaven." It was exactly the type of job he wanted. He got the position and getting a set aside for disability-specific substance abuse programming was at the top of his list of priorities. Hulick was the pivotal force behind the legislation's enactment. His legislative and public policy acumen were essential in the ultimate success of the legislation. Hulick credits the passage of the bill largely to the fact that someone could devote full-time attention to it.

Although having a full-time advocate was crucial to the bill's passage, there were a few other hurdles to jump.

Hurdle one:
Lack of Coordination Between the Deaf and Disability Communities

When he stepped down, Hulick hired Steve Shevlin to replace him as Director of Signs of Sobriety. Shevlin moved from New York to accept the position. Shevlin recalls Hulick telling him that one of his duties would be to form an advisory committee that would generate interest in, and garner support for, the bill. Shevlin was skeptical about forming alliances with other disability groups because, in his experience, "the deaf community and the disability community don't always get along so well." He describes the complex relationship as multi-layered. First, most deaf people do not identify themselves as having a disability. They experience a "communication barrier"-if the general population knows sign language, deaf people are not hindered in society. Second, some deaf people want to avoid the stigma of having the label of disability, and in doing so, offend persons with other disabilities who do not view their own disabilities as negative. In working together, deaf people often find that although someone may be blind or have a physical disability, they are still hearing, and don't necessarily understand the experiences and frustrations of a deaf person. For instance, it is commonly believed that providing an interpreter is creating equal access for a deaf person, when in fact an interpreted conversation is not the same as direct communication, where both people are speaking the same language. In an interpreted conversation, nuances and subtleties that are crucial to communication are lost.

Despite his misgivings, Shevlin assembled an effective cadre of representatives from the deaf, hard of hearing and other disability groups to work on the legislation. He believes the group was effective and worked well together because they openly discussed their fears of working together, what might go wrong, and how the alliance could hurt the individual groups they represented. This open communication led to educating one another and made it possible for people to put their differences aside and work collaboratively. Ultimately, everyone realized that there was enough common ground on this issue for cohesion.

This group made presentations and conducted all day workshops all over the state for various agencies in the substance abuse and disability fields. Most importantly, they met with key local stakeholders to describe the needs of the population and demonstrated how the individual counties were not meeting them.

Hurdle Two:
The Governor's Council on Alcoholism and Drug Abuse (GCADA) Opposed the Legislation, Calling it "Flawed Policy."

Changing the source of funding to the Drug Enforcement Demand Reduction (DEDR) Fund should have been a non-controversial move. The DEDR Fund is the pot of money collected from drug fines. The Fund collected more revenue than was obligated, so the appropriation was essentially an unspent balance that would have to be returned to the state's General Fund anyway.

However, the Governor's Council on Alcohol and Drug Abuse (GCADA) had a different view. The GCADA receives its appropriation from the DEDR Fund, dispensing its share to local municipalities to fund prevention, treatment and aftercare programs. The GCADA was very protective of the DEDR Fund. In 1994, the legislative session when the bill gained ground, the GCADA began to pay attention. First, the Council was concerned that if legislation appropriated a portion of the fund for one purpose/group, it would set precedent for others, potentially draining the fund. Second, the GCADA asserted that the provision of services to persons with disabilities should be planned and implemented on a local level-addressing the needs of persons with disabilities was in their legislative mandate. According to the GCADA, local communities knew best what the needs of their constituents were. The GCADA also asserted that large amounts of the DEDR Fund had been diverted to the Department of Health and Senior Services for the past five years, over which programs for special populations could have been established.

For these reasons, the Council went on record opposing the legislation. While the GCADA was supportive of providing services to the disability population, it thought that using DEDR funds was the wrong way to go.

In order to collect information about the need and thereby propose an alternate way to serve the population, the GCADA held a series of public hearings to get input from deaf, hard of hearing and disabled persons of how best to meet their substance abuse needs. Several individuals working within the disability community, such as Hulick and Maslansky, advised the GCADA that the forum of public hearings was not an effective way to get input from persons with disabilities, particularly from the deaf community, whose members tend not to air their business publicly. Nonetheless, the GCADA went ahead, spending a great deal of effort publicizing the hearings. But, as anticipated, the turnout was quite low, yielding little information. GCADA staff also conducted telephone and individual interviews with various professionals regarding the substance abuse needs of persons who are deaf, hard of hearing or with other disabilities.

They compiled the results and published a report with recommendations pertaining to the pending legislation, including the following: specifying where the money would go, how it would be allocated and spent, funding projects that have clear goals and objectives, supporting mainstream programs as opposed to specialized ones, collecting reliable statistics on alcohol and drug problems among the specified population, and calling for qualitative assurance procedures conducted several times a year. Some of these recommendations had an impact on the legislation and the program, such as the requirement for projects to have clear goals, objectives and measurable outcomes and the conducting of a needs assessment.

Additionally, the GCADA wrote letters to the legislature and testified at the senate and assembly committee hearings, opposing the legislation. The deaf and disability advocates made presentations to the GCADA and its local affiliates explaining the need for the legislation. As it became apparent that the bill had unanimous public support and was going to pass, the GCADA changed its stance to support the bill with the stipulation that the recommendations outlined previously were included.

At the bill's final hearing in the New Jersey Assembly on November 20, 1995, several people testified, weighing in to support the bill, including representatives from Signs of Sobriety, the New Jersey Coalition on Disabilities and Addictions, the GCADA, and DAS.

Key Dates Relating to Passage of Public Law 1995, Chapter 318

Why New Jersey?

In conducting field work for this case study, we asked several interviewees Why New Jersey? What elements were present in the state that created an environment for such a law to be developed and pass the legislature?

A Small State

Several advocates had previously worked in New York and commented that New Jersey had a smaller, more organized service system. Because of its size, networking was easier. There was a stronger connection between local services and the state agency. There were more opportunities for networking in local communities. There was a smaller, more organized service system. In terms of disability services, there were more independent living centers and strong disability leadership.

Strong, Cohesive Addictions Field

Many remarked that the addictions field in New Jersey was very organized, and worked together effectively as a collaborative network. The GCADA structure made representatives of the field accessible to the advocacy groups as they tried to promote the legislation.

State Agency's Commitment to Continuum of Care

DAS focused on maintaining a continuum of care and ??? resourcing ??? it to meet the needs of persons with disabilities. As the Division on Alcoholism, then the Division on Addiction Services, New Jersey state government developed a continuum of care in the area of deaf (and other disabilities), and also grew a core of professionals to work in these new programs. These individuals, many of who were members of the groups they represented, then collaborated, to ensure that quality services were being delivered throughout the state.

IV. The Legislation and its Implications

Title: Public Law 1995, Chapter 318: Alcohol and Drug Abuse Program for the Deaf, Hard of Hearing and Disabled

Funding: $350,000 annually

The law is groundbreaking for a number of reasons, but mainly because it is the first set-aside in the country for substance abuse services for persons with disabilities. Several states have had strong advocacy movements on the issue, but none to date have secured a set aside. As noted previously, a set aside is a significant step in assuring that the substance abuse needs of persons with disabilities are met.

Civil Rights Language

The document itself is important because it publicly asserts the substance abuse needs of the population and acknowledges the lack of access. In doing so, the document is unique in that it frames the problem in a sociopolitical context. Some key passages are excerpted below.

"The Legislature finds and declares that:

"The Legislature further finds and declares that:

Key Program Elements

The legislation calls for the following:

The provision of an Advisory Committee gives advocates a direct link to the state agency, the Division of Addiction Services, ensuring that the legislation is implemented with integrity. The Advisory Committee guides the program, assuring that it continually meets the needs of the community and that the funds are utilized to the maximum potential.

Again, the funds are not to be used to operate services or make existing services accessible by making architectural modifications, etc., unless these adaptations are made while designing a specific model program. Due to the limited appropriation, the emphasis of the legislation is on expanding and building upon the already established foundation of accessible substance abuse services, whether in an integrated setting, or provided discretely.

V. Implementing the Legislation

Convening the Advisory Committee

It took over a year before there were any noticeable moves to implement the legislation. The first step was to assemble the Advisory Committee. Names were forwarded to Commissioner of Health and Senior Services, then members were appointed. The initial Advisory Committee was comprised of several long time activists such as Debra Maslansky. John Hulick, the one who initiated the process, served as the Advisory Committee's first Chair.

The legislation was passed in January 1996 and the first Advisory Committee meeting was convened in March of 1997.

Now that the Advisory Committee has been assembled, additional members and replacements are appointed in the following steps:

Process for Appointment

Advisory Committee Composition

The legislation mandated that the Advisory Committee include the following members:

The legislation also mandated that the Commissioner serve as an ex officio member of the Advisory Committee. The DAS Disability Specialist attends each meeting as a representative of the Assistant Commissioner.

The Assistant Commissioner has appointed an additional representative from the Division of the Disabled, Department of Human Services.

The Advisory Committee developed governing by-laws and uses Robert's Rules of Order to conduct its business. They build consensus to make all decisions.

Barriers to accomplishments have mainly been:

Needs Assessment

After P.L. 1995, Chapter 318 was passed, the provision of a (current) Needs Assessment was one of the first orders of business. A needs assessment was in the GCADA's recommendations and the Advisory Committee also advocated for it as a means to tailor the funding application to what was needed in the field. In addition, the Commissioner of the Department of Health and Senior Services was reticent to release funding until the needs assessment was complete. In December 1997, a year after the Advisory Committee had been formed and two years after the law had been passed, an independent (non Advisory Committee member, non-DAS staff) evaluator was hired, Dr. Rebecca Clark. By this time, over one million dollars had accumulated ($350,000 annually), creating considerable pressure to complete the needs assessment quickly, so funds could be released.

Advisory Committee member, Steve Shevlin identified Dr. Rebecca Clark as a qualified candidate to conduct the needs assessment. When hired, Dr. Clark was working as an independent researcher, but had twenty years' experience working with persons who were deaf, hard of hearing, and had other disabilities as a licensed social worker and mental health worker in New York, giving her direct knowledge of the subject matter. In her clinical capacity, she was highly involved in addressing substance abuse issues. As she explained, "Because of the lack of access to services, (as social workers) we are the be-all and end-all (to our clients) by default." The Advisory Council interviewed Dr. Clark, her references were checked and she was hired. The contract for the needs assessment was $25,000.

A Sub-Committee made up of Advisory Committee members and DAS staff oversaw the Needs Assessment. The following information is culled from the final document, New Jersey Alcohol, Tobacco, and Other Drugs Services For People with Disabilities: Needs Assessment, by Dr. Rebecca Clark, completed May 1999.

Needs Assessment's Purposes

The Sub-Committee, in collaboration with the full Advisory Committee, defined the goals of the Needs Assessment.

Methodology

Dr. Clark designed the study's methodology-The gathering of information from diverse sources, about both the general topic of substance abuse and disability and the specific program needs of the New Jersey system. The approach borrowed heavily from needs assessments conducted in California by John de Miranda. The New Jersey Needs Assessment consisted of the following:

Major Findings

The major findings of the New Jersey Needs Assessment are similar to results from several other regional and national studies conducted over the past decade. The results are outlined below.

The recommendations that came out of the Needs Assessment had significant impact. They drove the RFA that was developed after its completion and therefore, what programs were funded. The list of recommendations is summarized below.

Accessibility to Prevention, Treatment and Aftercare Services

All programs should examine their programs and policies (including medication policies), take steps to comply with accessibility standards and if found out of compliance, DAS should make sanctions against them. County plans should address the needs of persons with disabilities. Strategies for providing accommodations for 12-step meeting participation should be explored. Informational materials should be developed in accessible formats. Accessible programs should target youth.

Education and Training

Cross-trainings for substance abuse service providers and disability service providers should be facilitated. Disability service providers should be trained to discuss substance abuse issues with their clients, provide them information and make appropriate referrals to appropriate services. Substance abuse certification programs should include training on disability issues. Substance abuse agencies on all levels should include disability in their data collection procedures.

Agency Coordination

County administrators should designate a staff person to coordinate services and to serve as chief liaison between substance abuse services, disability services, DAS and persons with disabilities. Local task forces should be developed to improve the coordination of substance abuse and disability services. People with disabilities should be integrated into substance abuse services by working as staff and serving on boards of directors.

Funding

Mechanisms should be explored to create a fund for 1) sign language interpreters, 2) captioned videotapes, 3) real time captioning, and 4) the development of materials for persons with limited English comprehension skills. The feasibility of a regional or central location should be explored to develop multi-county funding for treatment and aftercare services for low incident disabilities. Substance abuse agencies at all levels should develop monitoring and enforcement mechanisms to ensure compliance with accessibility standards. Funding resulting from the cancellation of contracts of non-compliant programs should be earmarked for and given to programs that are in compliance.

Barriers to the Needs Assessment

Although the Division of Addiction Services, the Advisory Committee and Dr. Clark were all satisfied with the Needs Assessment, everyone acknowledges that there were snags in the process.

Funding of Programs

Three years after the legislation had been enacted, an RFA process was still not in place. The Advisory Committee was waiting for the Needs Assessment to be completed because they wanted to base program funding on the study results. But three years of unspent revenue had accumulated-over one million dollars-raising a red flag to the New Jersey Treasury. The Advisory Committee was in a bind. They were afraid of losing the money, but not quite ready to solicit applications for extensive program funding. They didn't feel they had enough needs-based data to identify projects and commit multiple-year funding.

An Interim Solution

The Advisory Committee decided to fund "seed" programs. The Commissioner and the GCADA allowed the Advisory Committee to release half of the funding that had accumulated. A request for "concept papers" was issued on June 22, 1998. The maximum grant amount was $75,000 and the grant period was twelve months. Several of the grantees would be refunded for a second year.

The funding eligibility criteria were simple, making it possible for a broad range of agencies to apply: "public non-profit agencies who had a demonstrated history of quality service to the target populations."

Applicants needed to submit a four page concept paper that included: 1) a brief agency description, 2) project description including needs, goals, objectives, implementation plan, target population and number of persons to be served, and 3) budget. Unlike the subsequent RFA, this application did not split the funding between programs for deaf and hard of hearing and those for other disability groups. Nor did this application require agencies to have a strong background in providing substance abuse services to the disability community. The Concept Paper initiative encouraged qualified and committed agencies to take a chance and broaden their current scope of services.

Besides meeting the immediate goal of disbursing the money, the Concept Papers also served as an awareness-raising tool. For some working in either the substance abuse or the disability fields, the issue of substance abuse among people with disabilities had not crossed their radar screen until the Request for Applications for Concept Papers.

The Advisory Committee received thirty-six applications which were reviewed by a subcommittee consisting of a select number of Advisory Committee members (in particular, those who were not themselves bidding for funding) as well as members of DAS staff. Applying agencies made a presentation before the subcommittee. Thirteen projects were awarded funding for total of $643,279. Grants ranged from $25,000 to $75,000. The range of projects and types of disabilities addressed were diverse-the development of a videotape describing the problem of substance abuse and disability, the provision of training interpreters on addiction issues and language, training of medical rehabilitation professionals on addictions and physical disabilities. All but two projects were awarded further funding in subsequent cycles. After projects had been funded, there was some additional money with which DAS provided interpreters for Certified Alcohol and Drug Counselors (CADC) course, so deaf persons could become certified counselors.

Major Funding for Programs

Following completion of the Needs Assessment, the Advisory Committee drafted criteria for the Request for Applications. The Advisory Committee and DAS collaborated extensively on criteria development. As Wanda Cintron, Chief of Special Populations, DAS notes, "It took a village to write that RFA." All Advisory Committee members were strongly committed to ensuring the program be as comprehensive as possible to meet the needs of the constituents they were representing. DAS was committed to utilizing the wisdom and expertise of the Advisory Committee. Everyone's dedication to create a valuable process, coupled with the bureaucracy of the funding cycle led to an arduous process, and somewhat confusing proposal.

The RFA was broken up into the following six sections

The first four parts equaled the balance of accumulated funds ($734,163) and parts 5 and 6 were the initial $350,000 set aside by the legislation.

On August 21, 2000, the Request for Applications for "Provision of Services for Deaf/Hard of Hearing and Disabled Persons" was released. DAS held a Bidder's Conference on September 22, 2000. Proposals were due October 13, 2000.

Although notification that funding was available was sent to 500 agencies and full application packages were sent to 185, there were far less applicants than anticipated. Reasons for the limited number of proposals submitted included the following:

*Program serves only persons with spinal cord injuries

Funding began on June 1, 2001.

VI. Impact of the Legislation
How it has Altered the System

The impact of the legislation can be measured far beyond the actual programming it has established. The effects have been far reaching, raising awareness of the issue within the disability and substance abuse services community and within the New Jersey Division of Addiction Services.

???National Impact???

Funding of Disability-Specific Programming for Three Years

The most obvious benefit of the law is the funding of new projects. To date, the Program has had two funding cycles, granting $1,727,442 to support 21 projects and programs. The broad range of projects include a three-year effort to establish and support regionally-based task forces, a one-year prevention program for disabled teens, and the development of a videotape documenting the issue of substance abuse among persons with disabilities. The first funding cycle under the Concept Paper initiative created an opportunity for agencies that had expertise in either the substance abuse or the disability field to take a risk and expand their scope of services. Therefore, the Program was able to provide seed money to those agencies that demonstrated their desire and ability to expand services, as well as continue to support agencies with a well-established history of services to the population.

All projects have measurable, quantitative goals that are monitored by the DAS. To ensure compliance with program agreements, the projects submit quarterly written progress reports and are visited by this DAS staff person periodically.

Advocacy/Systems Change

The legislation is innovative in that its goal is not to fund services per se, but instead to make systemic changes in the state's substance abuse service infrastructure. The strategy includes multiple interventions such as instituting an advocacy network to create and implement a statewide needs-based strategic action plan and design effective treatment modalities for replication as opposed to creating treatment beds. The legislation specifically states that funds are not to be used to operate services or make existing services accessible by making architectural modifications, etc. With the limited appropriation, the emphasis of the legislation is on building a foundation of accessible substance abuse services, whether in an integrated setting, or provided discretely. The New Jersey Prevention Network, a statewide agency, was awarded the three-year grant to facilitate and support regionally based local task forces.

With three years of funding, Hulick is hopeful, stating that, "This group has the capacity to reach out to their county-based alcoholism and drug abuse authorities and plan for disability in their county plans."

Advisory Committee's Role and Accomplishments

The Advisory Committee plays a pivotal role in not only implementing the legislation, but in ensuring that the needs of persons who are deaf, hard of hearing and with other disabilities continue to be addressed within DAS.

Lily Kaufmann, current DAS Deafness/Disability Specialist sees the Advisory Committee's role as not only advising the Commissioner on how to spend the $350,000, but also making suggestions that will improve the overall quality and availability of services to persons with disabilities in New Jersey. Kaufmann reports that the Assistant Commissioner considers all suggestions made by the Advisory Committee. For instance, based on a recommendation by the Advisory Committee, leftover funding from the Concept Paper initiative was used to provide sign language interpreters for CADC classes, so deaf persons could become certified addictions counselors. Similarly, due to a proposal by the Advisory Committee, a disability segment in CADC credentialing was added. Because of their expertise and experience in the field, the Advisory Committee is invaluable in their role as a referral source for recommending qualified staff for disability programs.

The partnership between the Advisory Committee and the Division of Addiction Services is one of mutual respect. Tim Cronin, representing the Division of Vocational Rehabilitation on the Advisory Committee, compliments DAS as "top notch" and "knowing what needs to be done." Likewise, DAS holds the Advisory Committee in high regard, Kaufmann observing the group to be "bright, committed professionals."

Raised Awareness of the Issue among Substance Abuse Community on all Levels

Almost all persons interviewed cited the increase in awareness of disability on all levels-from the Division of Addiction Services to the Governor's Council on Alcoholism and Drug Abuse to local alcoholism and drug abuse prevention and treatment programs-as the biggest impact of the legislation.

???Lily Kaufmann thinks this paragraph depicts DAS as being clueless. I disagree, but changed great to greater??? The Division of Addiction Services has gained greater awareness about disability access issues through the hands-on experience of setting up the Advisory Committee meetings. Ensuring that the meetings sites are wheelchair accessible, hiring sign language interpreters, translating written materials into alternative format-all of these tasks have been instructional for DAS staff.

Steve Shevlin asserts that the Advisory Committee is successful because they are working to integrate disability into county plans, not add on something separate and different. Where the GCADA once opposed the legislation, they now work with the Advisory Committee and the disability constituency across the state. He believes this change of heart is because, even before the legislation was passed, the (informal) coalition had stated their intent to integrate disability needs into services and, over eight years later, are still working toward that goal.

In this spirit, the Governor's Council on Alcoholism and Drug Abuse passed a Resolution for Alliance events to be held in Architecturally Barrier Free Locations, following testimony given by Maslansky in 1997.

Additionally, by appointing an Advisory Committee that meets with the Assistant Commissioner and by funding an advocacy network, DAS demonstrates their commitment to the disability issue. "Providers now know that we're serious about providing services to the disability population," states Wanda Cintron, Chief of Special Populations.

Legislation Gives the DAS Deafness/Disability Specialist a Stronger Defined Role

Since created in 1989, the position of Deafness/Disability Specialist has been a strong force within DAS to establish and monitor disability specific services. However, the role is strengthened even further by the legislation in that this DAS staff person has a legislatively mandated program to oversee and a direct link to the Assistant Commissioner.

VII. Identified Gaps and Recommendations

During each interview, we asked, "What else is needed to make substance abuse services accessible to persons with disabilities?" While respondents agreed they were satisfied with the legislation and the results had exceeded expectations, they all viewed the Program as a jumping off place for a larger effort. Advisory Committee member Tim Cronin states, that he's "very satisfied. We're finally to the point where the money can be realized; we're at the end of the tunnel." But he also acknowledges, "Do we need to do a lot more? Yes, a lot more." Several recommendations reflect the Needs Assessment findings. They are listed below.

More Money for Disability-Related Programs

All respondents stated that although it was an excellent start, the amount of funding in the current legislation is inadequate. In relation to the breadth of the problem, considering the number of people with disabilities in the state that have a need for services, Shevlin characterized the appropriation as "ridiculously small." Terrence O'Connor agreed, stressing that "even with a conservative estimate of the affected numbers in the population, $350,000 isn't very much money." Whether for disability-specific services, the development of model programs, or activities that facilitate systemic change, substantially more funding is needed.

Inclusion and Discrete Services

In addition to more funding, several respondents cited the ongoing need for discrete services for certain populations. For instance, persons with communication differences such as deaf persons or significant cognitive impairments such as persons with traumatic brain injuries may not benefit from mainstream programs. Hence, it is critical to collect reliable data on the need of substance abuse services by low incidence disabilities of all types.

Disabled People in Counselor Roles, Opportunities for People with Disabilities to Become Trained as Counselors

Steve Shevlin reported that another critical gap is the lack of deaf/hard of hearing persons and persons with other disabilities in direct service roles. He pointed out that, when talking about inclusion in the substance abuse service field, all aspects should be considered, including service provider positions. He and other Advisory Committee members continue to press DAS to create opportunities for people with disabilities to become trained as counselors by providing scholarships and ensuring that accommodations are available in certification classes.

Conclusive Data Collected on a Consistent Basis

O'Connor noted that, "We'll always be faced with the challenge of how to spend the limited appropriation and reliable data is critical to guide that process." The Needs Assessment was not conducted to establish a general need for substance abuse services, but to gather information on the specific needs of various disability groups, types of providers and geographic communities. But due to the problems noted previously, the data were generally inconclusive. Each county needs to institute a method of collecting data on their citizens with disabilities and uniformly report that information to the state. With solid data, counties will be able to allocate resources and plan services appropriately for persons with disabilities.

Disability Included in County Plans

Hulick identified the New Jersey Prevention Network as the key player to ensure that appropriate data is collected over the next three years. Among the NJPN's objectives is the development of a comprehensive, statewide needs-based plan. "At a minimum, that plan should inform local entities how to address low-incidence disabilities on a regional and/or county-wide basis."

Possible Next Steps

Because the legislation is new and programs are just finishing their first year, everyone acknowledged that its impact cannot be adequately measured at this point in time. There are many expectations for outcomes of P.L. 1995, Chapter 318's programs that are, as grantee Dr. Roberta Schaffer states, "just in their infancy."

John Hulick, the prime mover of the legislation, sees this first round of three-year projects providing a foundation for improved substance abuse prevention and treatment services. The outcomes of the various projects-the model program designs for deaf people and people with other disabilities, the support for persons with disabilities to become certified counselors, the regional task forces and the statewide needs-based plan-should form a base from which to build a strong, comprehensive service infrastructure.

Hulick and the other advocates who toiled to put the legislation and its projects in place are committed to seeing the process through. As Hulick says, "It's just getting good."

VIII. Conclusion: A Replicable Model

In the mid 1980s, social workers, vocational rehabilitation counselors, special educators and others began meeting over lunch to brainstorm solutions to the lack of substance abuse services for their clients, friends and family members. These discussions were taking place all over the country, in all types of communities, not just in New Jersey. Passionate activists around the country have spent countless hours and considerable energy into opening treatment doors for people with disabilities, by employing a multitude of strategies-facilitating cross trainings, surveying programs for accessibility, etc. But New Jersey is the first state to create legislation that earmarks funding to create accessible substance abuse prevention and treatment programming.

Replication Aspects-How to do this at Home

There are several elements that were in place that were crucial to New Jersey's success.

Senator Ewing offered this last piece of advice. He said, "If you believe in something, you can't get discouraged. You have to keep pushing."