Of Aging, Advocacy And The Long Road Ahead
By Jeff Thom
Rather than a comprehensive Governmental Affairs report, my column for this issue will center around advocacy efforts in the aging and vision loss arena. However, as you will see, the article will be far more than just a chronology of events on our advocacy efforts. It will focus on my observations during this advocacy journey. I don't claim to be a font of knowledge on this subject, but I do have the "power of the pen" at my disposal and invite others to consider the content of this article critically.
When I learned that the Governor had promulgated an executive order requiring the preparation of a Master Plan on Aging and persons with disabilities, I knew that the blindness community had to participate in this effort in order to make its needs known. My first attempt, which was to obtain a position on the Statewide Committee for the preparation of the Master Plan, did not succeed. This led to the calling of some meetings with others in the aging and vision loss field to attempt to craft some recommendations for submission to the committee. Those meetings resulted in some fascinating discussions, but perhaps as much due to the busy schedules of so many folks, these discussions did not come to final fruition. Late last year, however, we learned that a Master Plan subcommittee was being appointed on long-term care services and supports. It was clear that this might serve as a way for us to enhance our participation in the content of the final report. I sought a position on this subcommittee and was fortunate enough to be the only individual with expertise in blindness and vision loss to be appointed.
Before discussing my experience on that committee and the outcomes we have been able to achieve, let me clarify that long-term care services and supports include all kinds of services in the home, community and residential settings. Thus, this very broad definition of long-term care services and supports applies to the types of rehabilitation-related services provided under the Older Individuals who are Blind program by the private agencies across the state providing specialized services to those who are blind or have low vision.
The subcommittee was comprised of many prominent figures in the aging field, a number of whom I was acquainted with from my lobbying efforts on CCB's behalf. As I saw it, my major task would be to ensure that the interests of persons with vision loss were adequately mentioned in the subcommittee report which is required to be completed by early March. Since the deaf-and-hard of hearing community was also not represented, I also worked to ensure that, to the limited extent of my knowledge about issues surrounding that population, the concerns of that community were also discussed.
I won't bore everyone with recollections of the hours and hours of in-person and telephone meetings, but will say that, beginning in November and continuing until even after you will have read this article, an enormous amount of hours has been spent on this effort. What I want to focus on is what was achieved, why it was achieved, and what I learned from the experience.
The content of the subcommittee report, which will not be finalized until March, but which I will disseminate when it is complete so that you policy wonk types like myself can read it, was driven largely by recommendations submitted by subcommittee members and organizations and individuals in the aging and disability field. Sadly, other than various recommendations that I submitted, I didn't see any emanating from the blindness field, although I didn't examine them all. Our first achievement was on a topic we have been working on unsuccessfully for four decades, namely changing the In-Home Supportive Services law to allow reading and document completion as a covered service. Our last effort, conducted jointly with the United Domestic Workers, an IHSS provider union, looked like it would finally get over the hump, only to have Governor Brown veto it. However, without my even having to suggest it, the United Domestic Workers' lobbyist, with whom I walked the halls of the Capitol working for our bill, submitted the recommendation as part of their package for the subcommittee report. The lesson is obvious: entering into coalitions with worthy and willing partners can lead to positive results even if the original work of the coalition did not succeed.
The second breakthrough came in an area that was actually the subject of a part of one of our in-person meetings and is something that everyone on the subcommittee could relate to. Not surprisingly, that topic was technology, and the guest speakers at the meeting even mentioned accessible technology that enhances opportunities for people with vision loss. The report contains a broad technology-related goal, not only applicable to all seniors, but to their caregivers as well. After all, I am only preaching to the choir when I say that we must absolutely do everything we can to ensure that the ongoing technology revolution continues to sweep us along with it, rather than passing us by. Now, as they say, to the rest of the story.
I submitted a variety of recommendations, including the need to make nursing and residential care facilities more accessible to people who are blind or have low vision, including having materials in accessible formats. Similarly, I submitted a recommendation that adult day programs and similar services needed to make their programs far more accessible and usable for people with vision loss. Obviously, I also submitted detailed recommendations concerning the need for more funding for specialized services for people who are blind or have low vision.
Weeks before I submitted my recommendation on specialized services for seniors who are blind or have low vision, I began to talk about them in our meetings in various contexts. One message I pounded home was that, like so many seniors, most of those with vision impairments are in the middle class when their vision markedly deteriorates. What surprised me, but I suppose it shouldn't have, is how little knowledge most of the subcommittee members had, both with respect to all of the services that specialized agencies provide for people with severe vision impairments, and the almost exponential rise in the unmet need for these services due to the dramatic increase in the number of seniors requiring them. It is evident to me that blindness advocates and services providers have done an extremely poor job in California and throughout the nation of educating those in the field of aging as to how important specialized services are to people with vision loss and how great the need is for additional funding. No wonder we struggle even to maintain federal funding levels for our services under the OIB program, while other groups receive occasional increases. Clearly, we need to do a far better job of making our case. As to what I was able to accomplish, I was hoping to get strong language specifically addressing specialized services for people who are blind or have low vision. However, in large part because the landscape of the report is so broad and in many cases recommendations had to be made at a high level, I did need to settle for less than I might have liked.
Nonetheless, recommendations that can have a positive impact on our population did make it into the draft report, including 1. "Establish a California Community Living Fund as a 'bridge' program that provides goods or services not available through other means to individuals either transitioning to the community or at-risk of institutionalization," and 2. "Provide incentives for Medi-Cal managed care plans to participate in an institutional diversion and transition strategy."
Finally, we appear to have been fortunate to obtain some excellent draft language on the topic of people with vision loss who reside in nursing and other residential facilities. The report recommends people with vision loss be provided "with information on menus, daily activities, among other things, in large print or other formats, orientation and mobility instruction that enables these individuals to navigate the facility successfully, and assistive technology that allows for communication with others outside the facility. Any aspect of nursing facility reform is a tough nut to crack, but it is probably long past time for CCB to engage in dialog with the industry.
Moreover, the work of our subcommittee is only one component of the ultimate report. Areas such as housing and transportation cry out for input from the blindness community perspective, and it is up to us to figure out a way to ensure that our input is received and included throughout the entire Master Plan, when it is completed later this year.
Finally, it will come as no surprise to many readers of my columns, that I absolutely believe that until we have a paid lobbyist representing our field, whether paid by a consortium of entities or by one organization such as CCB, we will continue to struggle to see our issues receive the attention they deserve, whether special reports, legislative initiatives, or regulatory changes. The days of extremely successful volunteer lobbyists have gone with the dodo bird and political civility. Such a lobbyist should be full-time, if possible, blind or low vision if at all possible, and absolutely must possess or very quickly acquire an excellent knowledge of both the California state government system and the important players, as well as sufficient connections to make him/her a force to be reckoned with. Nonetheless, it is imperative that CCB continue to do its best with what it has and do its utmost to advocate for services that will enhance the ability of persons who are blind or have low vision to maximize their potential and live independently.
