In May of 1992, we didn’t know much, but we knew that we would need each other. So began the necessity of the California Community Supported Living Arrangement Fax Network.
CSLA was new to our agency (Sacramento Vocational Services), as was residential support services for that matter. We had provided supported employment services for 12 years to meet a variety of consumer needs, but had hesitated to jump into providing any kind of institutional, license-based residential care model. CSLA looked like a great opportunity to serve our consumers residentially along the same value lines as we had been enabled to do with employment.
At the time of the first CSLA Fax in June of 1993, 7 Regional Centers were providing CSLA services as an option through an unassociated, group of some 30 providers; unaffiliated with no common association, lobbyist, or advocate. Many had a long and rich history of providing ILS and other residential services; many had no experience. All had studied the “Bible” (the 153 page DDS Community Supported Living Arrangements Manual). Initiating the California CSLA Fax Network really was born from this agency’s basic self interest—to benefit from the past, present, and ongoing experiences of our fellow CSLA pilot vendors. No less than the fate of the state’s ability and desire to serve consumers with severe challenges to live in homes of their own was at stake. If we failed in this effort, this option might never again be presented to Californians with severe disabilities. The commitment of CSLA fax network participants would be this: to respond to the bi-monthly fax questionnaire as often as possible, and to respond as honestly as possible until the end of the pilot in September of 1995. It was out of a desire to ensure honest responses that it was decided early on not to release the specific fax responses to any monitoring agencies. It has remained so to this date.
During the period of time from June of 1993 to the present (July of 1995) 13 fax questionnaires have been faxed out and responded to. An average of 10 agencies have responded to each of the questionnaires, with responses being sent back to all agencies responding. Here then is a summary of the largest issues we dealt with and what we learned:
ISSUE #1: PERSONNEL. The overwhelming issue over the past 3 years has been, and continues to be the recruitment, screening, payment models, and support of the staff who directly support our consumers. 52% of the fax questions dealt with this issue in its various forms, i.e. wage rates, scheduling, screening, DOL regulations, payment mechanisms for rent subsidies. What did we find out? We discovered that it was possible, under California Wage Order No. 15 ( governing the employment of persons providing care to elderly or disabled people in private homes), to exempt most CSLA employees from overtime, meal breaks, and minimum wage provisions. Many agencies discovered this provision simultaneously, and shared the information. Gary LaVigna with IABA graciously faxed a memo on “Paid Roommate/Companion -Federal and State Minimum Wage and Overtime Requirements” to the network. Recruitment, training, motivation, and retention of staff was also a big issue. The overwhelming responses told us that “word of mouth” was the best recruitment tool, that direct support employees needed to be paid at least $6.20 per hour to meet quality and retention standards and that Live-In Roommates averaged about $1100 per month, including rent (in exchange for an average of 15 hours per day of support). Beyond monetary compensation, they needed intermittent reinforcers which ranged from “Employee of the Month” awards, to giving them a night off, sending a pre-paid pizza over the household once in awhile, to just supporting them through the hard times by listening. How do you pay CSLA employees while still tapping into available IHSS monies? This was a critical challenge, and one that did not go un faxed throughout the two years. Most agencies did fully utilize available IHSS hours by applying the amount of these monies to pay for some of the required hours of service (usually the personal care and non-community based services) and CSLA monies for other hours (training, community access, planning, etc.). For some agencies the Live-In Attendant was paid for a number of set hours (i.e. 15 hours per day and 2-3 weekends of work per month) in exchange for a reasonable base salary and a share of the household rent. For others, an hourly wage was paid for awake hours (i.e. $6.20 - $7.00) and $4.25 paid for asleep hours. Some agencies were able to offer medical benefits and those who could not do so recommended that retention would be enhanced if benefits could be paid.
ISSUE #2: RISK AND CHOICE. Oy Vey!! the fax questions, concerns, and fears that have been expressed over the past two years!! Close to 40% of the fax questions and responses have dealt with the issues of risk and choice, both on the part of consumers, and not surprisingly, on the part of agencies. There was the threat of a $10,000 per day fine for violating a minimum protection provision of CSLA. Ever above us was the vision of what Kathy Brian (CMT Director in our area) early on termed the “great balloon of blame” that was sure to hover over our efforts, ready to burst should a consumer be “allowed” to make an unwise choice and fall victim to injury or death while receiving CSLA services. The responses of the network? Minimize risk by providing adequate supports and services, and document, document, document, your attempts. All expressed that an unavoidable precursor to growth was the opportunity for risk. We shared that many times risk in licensed facilities is discouraged, if not regulated away. As one of SVS’s CSLA consumers, Mark, recently said of his prior experiences in institutions, “I never got enough salt.” The seasoning of life, risk, had been removed. He never got more salt than he needed, but he also never got enough. Did we come to a conclusion, or a formula for calculating risk and exposure? No. We did, however bond around the belief that consumers deserve finally to experience risk, and that we, as agencies better be prepared to support risk taking, to know our own tolerances for risk (from direct staff on up to Board of Directors) and we had better be competent in our strategies around minimizing negative, and even terminal outcomes. The forms of risk taking ranged from spending food money on CD’s, to inviting newly made friends to spend the night in their homes, to the issues of supporting an active alcoholic, to a person with quadriplegia choosing to bungee jump. We saw it all, and we dealt with it all.
ISSUE #3: 24-HR. EMERGENCY RESPONSE SYSTEMS. The CSLA Manual said we had to provide a sure mechanism to enable consumers to reach us on a 24-hour a day basis, and we did. 80% of the CSLA agencies who responded said they used a modified on-call pager system for after-hours emergency response. Sometimes the duty of responding fell to the Program Director, most often to Community Support Facilitators, and even sometimes to “deputized” direct care staff. Other systems included Lifeline Systems, shriek alarms, baby monitors, Pac Bell customized phones, electronic door openers, responsive neighbors, etc. Some had developed hourly rates under this service code that supported specific on-call staff. Others included the costs of providing this capacity in as many as three other possible service codes (Personal Assistance, Support Services, and Training and Habilitation). Issues here had to do with assisting consumers (and staff) to discriminate between emergency and non-emergency reasons to contact CSLA agencies after hours. One had even developed a “Pager Quiz” that gently assisted staff in discriminating urgent from non-urgent issues.
ISSUE #4: HOUSING. “How can you find affordable housing?” This question came mostly from Southern California and Bay Area agencies. The efforts to acquire Section 8 were stronger in these areas simply because a consumer could not afford to live without roommates in the absence of a rent subsidy. How can we fund housing adaptations to make our consumer’s apartment or house more accessible? No easy answers were discovered here. Issues seemed to be highly specific to the agency’s geographical location, and strategies responsive to those issues.
ISSUE #5: CSLA RATES AND COSTS. Last, and most in the forefront at this time, were the questions regarding rates and costs. Since the services and supports available under four of the five service codes were basically interchangeable, many questions focused on what each agency was charging under each code, and what those services consisted of. Due to the overlapping definitions, it followed that each of the agencies would do it differently, and we did. Some agencies wrapped the costs of their Program Director into the Training and Habilitation rate; others separated it into the Administration rate. Still others spread their administration between all the service codes. In some areas, Training and Habilitation rates were directly tied to hours provided by the Community Support Facilitators; in other agencies, there were designated Trainers who provided actual skill training to consumers. Rates for 24-Hour Emergency supports were sometimes tied to specific on-call personnel, and other times, they included only the costs of a Lifeline system and its maintenance. The raw fiscal data presented to Allen, Shea, and Associates for the final fiscal summary will surely be a challenge to unravel, and a more difficult challenge to interpret. As Yul Brenner wailed as the King of Siam , “It’s a puzzlement!” What was clearly conveyed over the past two years, as we traded information over the CSLA Fax Network, was the wide variability in monthly costs to Regional Centers. This variability ranged from a low of $450 per month for one consumer with low, but ongoing, needs to a monthly invoice of nearly $10,000 for a consumer with unusually high needs. The variability, upon examination, was in almost every instance tied to the consumer profile. Some agencies were not serving consumers with total care needs, some only served consumers who were ambulatory, and some served many consumers who were non-verbal. All agreed that costs should be flexible, and meet consumer needs based upon a thorough assessment of consumer needs and resources. The idea of an arbitrary cap was rejected as exclusionary, denying services to the most severely disabled.
OTHER ISSUES. Many other issues were presented and dealt with over the Network, including sexuality - now that I can “do it” how do I “do it”? from an agency providing services to severely physically challenged; adaptive devices - how do I find out about them, and who will pay to assess the consumer and pay for the device?; why does a shower chair take 8 months to be approved through a Medi-Cal TAR process, etc.; natural supports - how do we initiate, monitor, and support their permanency?; and finally the issues of team building with Regional Center service coordinators and Community Monitoring Team members. Role definition came up again and again; how do we balance our roles and responsibilities, which are defined by necessity and urgency, as Regional Center Consumer Service Coordinators’ caseloads grew to 90-115 in many areas?
CONCLUSION. The CSLA funding clock is winding down, right at a time of great concern in our system over cost containment and fiscal uncertainty. The penultimate fax question asked how each Regional Center was tackling the transition issues around the conversion of CSLA to Supported Living services. Most expressed that, in the absence of Supported Living Regulations, a great deal of uncertainty was present in their areas. Many wanted to know, as one of the consumers we served expressed, “Did we pass the test?” Did CSLA answer the questions it set out to, regarding costs, strategies, system change and needed resources? Many agencies have not had new referrals to their programs for up to a year. Will supported living services continue to be provided to consumers with severe developmental disabilities, and if so, what will define the difference between Independent Living Services and Supported Living Services? Will costs dictate who will be served with supported living, and who will not? Will federal Medicaid dollars continue to flow? Is there life after CSLA? More questions were expressed in the last fax response than answers and I think that reflects the current status of CSLA agencies.
The best part of the CSLA Fax Network, from my perspective as moderator, was the excitement both expressed at the beginning and even now as we lay our weary heads down, as CSLA comes to an end. Was it all worth it? The responses to that questions were unanimous: “Yes, yes, and yes!” To support and witness “clients” and “ex-residents” designing and managing their own supports, taking on tremendous challenges and risks, and learning from those experiences; to have been able to support life changes in consumers long hoped for, but never before attained, was worth it all.
WHERE DO WE GO FROM HERE? The last CSLA Fax Questionnaire asked, “Shall we continue the network after September 1995?” The response was unanimously positive. Many expressed the need, especially now, to link together to support continued supported living services, to stand together on issues of appropriate costs, and to continue to share questions, resources, and successes. Thanks to all the agencies who shared their experiences over the past two years, and a particular thanks to the consumers who accepted the challenge of CSLA and who even now, for those who will listen, continue to challenge us with their dreams of living in homes of their own.
After September, 1995, the Network will be available to all Supported Living agencies. Requests to join can be addressed to: Donna Bettencourt, Sacramento Vocational Services, 6950 21st Avenue, Sacramento, CA 95820 (916)281-1300; FAX 381-9026.