By Jill Escher, president, Autism Society San Francisco Bay Area
Yesterday I made yet another trek to Sacramento to engage in the public debate about our failing community service system for adults with developmental disabilities. Last year, as we have noted previously in this blog, the Brown administration launched a "Developmental Services Task Force" to look at strengthening the community-based (ie, Regional Center) service system. This DS Task Force grew out of a prior task force which was devoted to making recommendations about the closure of California's remaining Developmental Centers. Only a smidgen of the state's DD population resides in DCs (less than 1%) but almost all political capital, and budget focus, has been on that tiny population, rather than on the 99.5% of DD citizens residing in the community—and usually with parents, as is the case with about 94% of DDS autism cases.
Here are some observations from yesterday's meeting.
• If nothing else it's a forum for articulating scope of the crisis and discussing topline issues among knowledgeable people, to give these topics airtime and maybe (just maybe) some momentum for change. The Task Force members are generally thoughtful and wise, though in my opinion ASD parents and caregivers are underrepresented and there are still too many DC-focused reps.
• The big takeaway for me was the obvious lack of any 900 pound gorilla of political leverage to make change happen. The message from the administration was pretty clear, "No additional resources in the budget for you, and there's really not much you can do about it." Everything in politics and war is a game of chicken, and they know there are no meaningful political repercussions for underfunding services for the desperately disabled. That was the tacit theme running throughout the meeting.
As a wise woman summed it up to me after the meeting, "It's easier to ignore the problem."
• There is an overall sense of "We won the DD entitlement battle (eg, Lanterman Act) but are losing the funding war" and that our "community system" is completely inadequate to meet the needs, including no avenues for housing. There is truly a sense of how "terrifying" the situation is.
• Diana Dooley, the secretary of Health and Human Services, at one point alluded to the true heart of the problem (though I don't recall the exact budget item to which she was referring): "We could fund $79 million, it could be $790 million, it still wouldn't be enough." In other words, she knows DD funding is a bottomless pit, we could pour taxpayer money into it all day and there would still be need. DD services are not a nice, neat box, but rather an explosively expanding universe, striking budgetary dread into the hearts of those who hold purse strings.
• At the same time Dooley is no fool nor heartless and I think she would sincerely like to find "design " and "tweaking" measures to improve the system. She is open to creative ideas to make things more efficient and effective. At the same time, members of the TF clearly know the system needs more money, and we are deceiving ourselves if we think money-free solutions can make a significant difference.
• Our letter (see previous blog post) was distributed, I spoke briefly, as did other friends of SFASA, who called in. The public comments were similar to those at the budget hearings (vendors can't stay in business, can't hire staff, we need a shot in the arm like yesterday). We are also not the only people digging for any possible creative solutions, various cost-saving measures were suggested.
• There was much reasonable discussion around the topic of the Byzantine system of setting vendor rates. Perhaps a better vendor rate system can be one good thing to come out of the TF.
• Bob Hamilton, executive director of North Bay Regional Center, had particularly wise comments and was unstinting about the nature of the crisis.
• Right now, the barriers to entry to provide ASD/DD adult services are nearly insurmountable: no rental vouchers, no funding for start-up costs, no ability to pay autism workers competitive salaries, lawsuits from neighbors that don't want DD-serving housing or programs in their backyard, unfunded mandates from the Medicare system, and more. It's a system currently designed to fail and fail big.
• The TF seems to have two general jobs ahead: (1) to define the scope of their mission (ie, are they willing to make bold statements and suggestions beyond just feebly moving chess pieces around the board?); and (2) figure out how to craft a set of recommendations.
Perhaps they can do a two-tier approach: (1) easier changes that should be made immediately and without major legislative push; and (2) broader structural changes that require greater political will.
So, from a practical standpoint, what can we at SFASA do?
(1) As I've often stressed, there is a notable lack of autism leadership in the state, and that void is palpable at the Task Force. The RC system will be about half autism cases in about 10 years.... yet the needed dramatic shift in quantity and type of services gets little airtime. With more than 100,000-150,000 autism cases in our state, we ought to have a muscular and loud group advocating for the needs of this very dependent and vulnerable population, but we don't. Strong statewide autism advocacy is a must, but we are miles away from that.
Part of the problem is that unlike other groups, those with DDS-eligible autism are by definition incapable of advocacy! If someone with autism possesses strong, or even passable, advocacy skills, he or she would be deemed too high functioning for eligibility. And their parents are often too busy, exhausted, confused, overwhelmed, panicked and broke to participate in vigorous advocacy. We are weak and silent almost by definition.
By the way, there is something of a trend toward embracing "autism self-advocacy" and diminishing the role of parents and conservators. What hogwash, and dangerous hogwash at that. My nonverbal kids, like the other DDS autism cases I know, would not be able to self-advocate out of an open box. Their brains are wired like so much spaghetti on a plate. I often think that the idea of autism self-advocacy is taken seriously not because regional centers really care for the will of individuals, but because it helps sideline and emsasculate those who are actually capable of advocating for quality services.
Now that I've ranted, what can we do to forge a powerful statewide autism coalition possessed of truth-telling, sharp rhetoric, and political brute force? We need beefy superheroes of adult autism services, but don't yet have them. I'm open to suggestions.
(2) Solutions will need to be about empowering the private sector. Perhaps we could ally ourselves with some smart Republicans to push for policies that invigorate the private (including nonprofit) sector to improve choice and cost effectiveness. If Republicans are more willing to help the DD community than the Democrats, then that's at least a tad of political leverage.
(3) Silent suffering is a problem. The steady abandonment of DD adults is not, like homelessness, in the public eye. The Dateline NBC piece "On the Brink" at least shone a preliminary light on the crisis for the public to see. But we are very far from creating a strong narrative that can animate and propel meaningful policymaking to address the adult autism crisis. A strong media strategy could help.
(4) Is civil disobedience an option? A lawsuit? I'm not sensing that, unless it's part of a broader master strategy toward very specific policy goals.
(5) Adult autism policy/funding change needs to happen at the federal level. Policy is so far behind the curve of the autism explosion that nothing is really happening beyond growing waitlists. Federal change is a must, but how to make that happen? Oh dear.
In sum, the autism community in California is in deep, horrible trouble. With our unprecedented massive population of devastatingly disabled children and young adults, coupled with a fragmented and weak community care adult services system, we are facing a crisis of epic proportions with no clear roadmap ahead.
A few months back, a friend said to me, "It will take a couple of murders for anything to change." While the last thing I would want is for any parent to harm a disabled child, it's increasingly looking like my friend is right. Without viable options for their grown children, desperate parents without a lifeline to needed support will take desperate measures, and then maybe the reality of the true bill for our autism epidemic will sink in. Let's hope it doesn't come to that.
Yesterday I made yet another trek to Sacramento to engage in the public debate about our failing community service system for adults with developmental disabilities. Last year, as we have noted previously in this blog, the Brown administration launched a "Developmental Services Task Force" to look at strengthening the community-based (ie, Regional Center) service system. This DS Task Force grew out of a prior task force which was devoted to making recommendations about the closure of California's remaining Developmental Centers. Only a smidgen of the state's DD population resides in DCs (less than 1%) but almost all political capital, and budget focus, has been on that tiny population, rather than on the 99.5% of DD citizens residing in the community—and usually with parents, as is the case with about 94% of DDS autism cases.
Here are some observations from yesterday's meeting.
• If nothing else it's a forum for articulating scope of the crisis and discussing topline issues among knowledgeable people, to give these topics airtime and maybe (just maybe) some momentum for change. The Task Force members are generally thoughtful and wise, though in my opinion ASD parents and caregivers are underrepresented and there are still too many DC-focused reps.
• The big takeaway for me was the obvious lack of any 900 pound gorilla of political leverage to make change happen. The message from the administration was pretty clear, "No additional resources in the budget for you, and there's really not much you can do about it." Everything in politics and war is a game of chicken, and they know there are no meaningful political repercussions for underfunding services for the desperately disabled. That was the tacit theme running throughout the meeting.
As a wise woman summed it up to me after the meeting, "It's easier to ignore the problem."
• There is an overall sense of "We won the DD entitlement battle (eg, Lanterman Act) but are losing the funding war" and that our "community system" is completely inadequate to meet the needs, including no avenues for housing. There is truly a sense of how "terrifying" the situation is.
• Diana Dooley, the secretary of Health and Human Services, at one point alluded to the true heart of the problem (though I don't recall the exact budget item to which she was referring): "We could fund $79 million, it could be $790 million, it still wouldn't be enough." In other words, she knows DD funding is a bottomless pit, we could pour taxpayer money into it all day and there would still be need. DD services are not a nice, neat box, but rather an explosively expanding universe, striking budgetary dread into the hearts of those who hold purse strings.
• At the same time Dooley is no fool nor heartless and I think she would sincerely like to find "design " and "tweaking" measures to improve the system. She is open to creative ideas to make things more efficient and effective. At the same time, members of the TF clearly know the system needs more money, and we are deceiving ourselves if we think money-free solutions can make a significant difference.
• Our letter (see previous blog post) was distributed, I spoke briefly, as did other friends of SFASA, who called in. The public comments were similar to those at the budget hearings (vendors can't stay in business, can't hire staff, we need a shot in the arm like yesterday). We are also not the only people digging for any possible creative solutions, various cost-saving measures were suggested.
• There was much reasonable discussion around the topic of the Byzantine system of setting vendor rates. Perhaps a better vendor rate system can be one good thing to come out of the TF.
• Bob Hamilton, executive director of North Bay Regional Center, had particularly wise comments and was unstinting about the nature of the crisis.
• Right now, the barriers to entry to provide ASD/DD adult services are nearly insurmountable: no rental vouchers, no funding for start-up costs, no ability to pay autism workers competitive salaries, lawsuits from neighbors that don't want DD-serving housing or programs in their backyard, unfunded mandates from the Medicare system, and more. It's a system currently designed to fail and fail big.
• The TF seems to have two general jobs ahead: (1) to define the scope of their mission (ie, are they willing to make bold statements and suggestions beyond just feebly moving chess pieces around the board?); and (2) figure out how to craft a set of recommendations.
Perhaps they can do a two-tier approach: (1) easier changes that should be made immediately and without major legislative push; and (2) broader structural changes that require greater political will.
So, from a practical standpoint, what can we at SFASA do?
(1) As I've often stressed, there is a notable lack of autism leadership in the state, and that void is palpable at the Task Force. The RC system will be about half autism cases in about 10 years.... yet the needed dramatic shift in quantity and type of services gets little airtime. With more than 100,000-150,000 autism cases in our state, we ought to have a muscular and loud group advocating for the needs of this very dependent and vulnerable population, but we don't. Strong statewide autism advocacy is a must, but we are miles away from that.
Part of the problem is that unlike other groups, those with DDS-eligible autism are by definition incapable of advocacy! If someone with autism possesses strong, or even passable, advocacy skills, he or she would be deemed too high functioning for eligibility. And their parents are often too busy, exhausted, confused, overwhelmed, panicked and broke to participate in vigorous advocacy. We are weak and silent almost by definition.
By the way, there is something of a trend toward embracing "autism self-advocacy" and diminishing the role of parents and conservators. What hogwash, and dangerous hogwash at that. My nonverbal kids, like the other DDS autism cases I know, would not be able to self-advocate out of an open box. Their brains are wired like so much spaghetti on a plate. I often think that the idea of autism self-advocacy is taken seriously not because regional centers really care for the will of individuals, but because it helps sideline and emsasculate those who are actually capable of advocating for quality services.
Now that I've ranted, what can we do to forge a powerful statewide autism coalition possessed of truth-telling, sharp rhetoric, and political brute force? We need beefy superheroes of adult autism services, but don't yet have them. I'm open to suggestions.
(2) Solutions will need to be about empowering the private sector. Perhaps we could ally ourselves with some smart Republicans to push for policies that invigorate the private (including nonprofit) sector to improve choice and cost effectiveness. If Republicans are more willing to help the DD community than the Democrats, then that's at least a tad of political leverage.
(3) Silent suffering is a problem. The steady abandonment of DD adults is not, like homelessness, in the public eye. The Dateline NBC piece "On the Brink" at least shone a preliminary light on the crisis for the public to see. But we are very far from creating a strong narrative that can animate and propel meaningful policymaking to address the adult autism crisis. A strong media strategy could help.
(4) Is civil disobedience an option? A lawsuit? I'm not sensing that, unless it's part of a broader master strategy toward very specific policy goals.
(5) Adult autism policy/funding change needs to happen at the federal level. Policy is so far behind the curve of the autism explosion that nothing is really happening beyond growing waitlists. Federal change is a must, but how to make that happen? Oh dear.
In sum, the autism community in California is in deep, horrible trouble. With our unprecedented massive population of devastatingly disabled children and young adults, coupled with a fragmented and weak community care adult services system, we are facing a crisis of epic proportions with no clear roadmap ahead.
A few months back, a friend said to me, "It will take a couple of murders for anything to change." While the last thing I would want is for any parent to harm a disabled child, it's increasingly looking like my friend is right. Without viable options for their grown children, desperate parents without a lifeline to needed support will take desperate measures, and then maybe the reality of the true bill for our autism epidemic will sink in. Let's hope it doesn't come to that.
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