A Brief Overview of Autism and Services for Developmental Disabilities in CaliforniaBy K. Yeates
Developmental Disorders are a Pervasive RealityIn every community there are families like mine, parents thrust into a journey that is unexpectedly difficult, challenging, and humbling. As a parent of a child with autism, I am used to feeling the eyes of strangers fall upon my child when we're out in public. The odd behavior my child displays, is met by strangers with a mix of curiosity, disdain and disregard. Sometimes we encounter other families who see the stimming (self-stimulatory behavior) and their warm, nonchalant reaction makes it clear that they “get” it, they understand the ebb and flow of these complex neurological differences because they have a personal connection to someone with a developmental disability.
Our kids are both unique and ubiquitous. They possess mysterious sets of seemingly contradictory capabilities and profound deficits. The exact symptoms, presentation, age of diagnosis, and prognosis for children with developmental disabilities vary widely, but the services and expert involvement needed by affected individuals are often very similar within our diverse communities.
Raising a child with autism is challenging and the non-stop requirements make the process isolating and all-consuming. Families are often unable to utilize support systems in place
and they often feel invisible and all alone within the community. Despite these real challenges, no families should be left to feel alone or isolated within such a growing community. There are more and more children being diagnosed with autism every year.
The term “autism” didn't exist until 1943, when child psychiatrist, Leo Kanner, coined the term to describe the distinct symptoms of 11 children in his practice. Although Dr. Kanner continued his autism research into the 1950’s, the diagnosis had still received little attention. Autism was still largely unrecognized and considered to be very rare in the thirty years after Kanner’s discovery. In 1975 the rates of autism were reported to be 1 in every 5,000 children (Autism Speaks, 2012). Before that time, children who displayed severe learning and behavioral problems received other diagnoses and were often institutionalized (Centers for Disease Control and Prevention, 2015).
During the last 20 years, there has been a twentyfold increase in the number of cases of autism in the US (Autism Speaks, 2012). A large shift took place in the acknowledgment of autism in the US in 1990, when autism became recognized as an eligible disability for education accommodation. Because of this educational change children with autism can now access specialized education without being labeled with outdated terms like “mental retardation” (Mandell, 2014).
In the year 2000, the US Centers for Disease Control reported that about 1 in 150 children diagnosed with an Autism Spectrum Disorder (ASD), since then the rate has grown dramatically again; 1 in 68 children have been diagnosed with an ASD (Centers for Disease Control and Prevention, 2015).
Autism spectrum disorders affect all racial, ethnic, and socioeconomic groups—no group is immune from the potential effects of these kinds of disabilities. Recent studies report that about 1 in 6 children in the United States has some form of a developmental disability, ranging from mild disabilities such as speech and language impairments to serious developmental disabilities, such as intellectual disabilities, cerebral palsy, and autism (Centers for Disease Control and Prevention, 2015).
The current economic costs associated with autism in the US total $137 Billion per year,because of associated education costs, healthcare expenses, necessary therapies, and lost income and wages due to the disorder. Autism ranks as a more expensive condition than asthma or diabetes (Mandell, 2014). The economic costs are far reaching across society, but so are the direct impacts these disorders place on individuals, families, and communities.
Our Special Needs Community Faces a Complex System in CrisisIn the state of California, many of the services for individuals with developmental disabilities were established by the passage of the Lanterman Act in 1969. The Lanternman Act enumerates the essential rights of people with disabilities and ensures funding for services, for qualifying individuals, in order to be able to utilize these civil rights and live as fully and independently as possible—like citizens without disabilities (Department of Developmental Services, 2015).
Despite progressive legislation and policy to support development disabilities, there continues to be great discrepancies with the services and quality of services that individuals with ASD receive. Many of the state-funded services are set up to address market failures, areas where the private economy has been unable to adequately address the needs of marginalized individuals. Although these services are incredibly valuable, there is no mechanism to ensure that the people who need these services are able to utilize them. State-funded services also lack many of the benefits that can be leveraged by private insurance: access to expert providers, coverage for mental health treatments, ample provider choice, and timeframe requirements. Because of the inequalities, these services often further marginalize people who already have difficulty communicating, or live on low incomes.
The services throughout California are in crises and underfunded which has also led to strict eligibility criteria for any of the services outlined in the Lanterman Act, which means that individuals who could potentially benefit most from services, have virtually no chance of obtaining support. Even children displaying dire symptoms are often denied access because of budget reasons. There is an inconsistency in the quality and quantity of coverage provided to individuals throughout the state. In California, a child’s service funding is more likely to be determined by geography and race rather than need or potential. Because of this discrepancy, parents often turn to legal experts in order to leverage power to be able to realize basic entitlements of the Lanterman Act—further burdening the system (Zarembo, 2011).
Limited Funds and Lack of Forward ThinkingIn California there are currently about 267,000 individuals receiving support and services through the Department of Developmental Services. These services totaled $4.7 billion within California’s 2014-2015 budget. Despite this enormous dollar figure, the system is on the brink of dysfunction and many services have been drastically cut since 2009 (Disability Rights California, 2014, p. 3).
In order to help where funding fails, state government is increasingly looking to private insurance companies to encumber costs, which has inadvertently created redundancies within the system. In most cases, California’s regional centers will only fund services if a client can prove that they've been denied funding through every other possible source. Families get caught in a cycle where no entity takes responsibility: bureaucracies direct clients in need to another program for a specific service and in turn, that agency will direct that client back to the original program that misdirected the client. This cycle is time consuming, cumbersome, and the constraints in place are inefficient and have yet to improve outcomes for individuals.
The funding and allocation of services is also not set up to enable sustainability. Public funds are primarily funneled to the most severely impaired individuals and not to support early intervention or community support systems. Out of the $4.7 billion yearly budget, only $16 million is allocated to the services that might be most beneficial long-term: investing in at-risk children ages one to three (Disability Rights California, 2014). California’s Early Start program provides comprehensive services to infants and young kids who are at risk or show signs of developmental disabilities and funds the Family Resource Centers throughout California. This includes support and education for entire families. Many times these therapies are so effective that children are not deemed eligible for regional center services after receiving early intervention. “Funding is made available on the basis of categories of needs rather than for integrated approaches, which leads to the much lamented fragmentation of efforts to provide solutions” (Mathie & Cunningham, 2003, p. 476). Not only are the services fragmented, but the need-based approach that drives the funding of government services for disabilities tends to problematize individuals with developmental disabilities rather than viewing them as stakeholders in the community.
In describing Assets-Based Community Development (ABCD) as an approach to maximizing the potential within communities, authors Kretzman and McKnight lay out a clear description of the way in which messages are leveraged for public policy formation: “Reliance on the needs map as the exclusive guide to resource gathering virtually ensures the inevitable deepening of the cycle of dependence: problems must always be worse than last year, or more intractable than other communities, if funding is to be renewed” (Kretzman & McKnight, 1996, p. 24). In order to simply survive, allies of the special needs community are forced to focus on the worst parts of our communities and the biggest deficits of our loved ones in order to secure funding to keep the most essential services in tact. This needs-based approach may negotiate some funding at the end of the budget process, but doesn’t generate sustainability, create momentum, or represent people in a way that is beneficial.
We need Change. Where do we start?In order for the system to change meaningfully, I believe we need to utilize a positive,
asset-based approach, empower individuals and their families at a community level from within. Additionally, we need to organize the individuals within the community to share their stories, participate in their advocacy, and inform the policy process to promote increased accountability. This accountability will ensure government funding which empowers people and improves outcomes.
We can start at the community level by broadening the scope of the Family Resource
Centers. If we can leverage policymakers to fully-fund the resource centers, we will be able to build more partnerships within the community, working from the ground-up. The heart of the resource centers is the inclusion of families and resources inherent in our local communities, which is why they would provide an ideal starting point for implementing Assets-Based Community Development (ABCD). In order to shift focus to capacity of the community and individuals with disabilities, we need to change how we conceive of, and talk about individuals with disabilities. We need to create meaningful partnerships to utilize and reinforce the abilities of the individuals who are so often unemployed or underemployed. “The basic truth about the 'giftedness' of every individual
is particularly important to apply to persons who often find themselves marginalized by
communities. It is essential to recognize the capacities, for example, of those who have been labeled mentally handicapped or disabled, or of those who are marginalized because they are too old, or too young, or too poor” (Kretzman & McKnight, 1996, p. 25).
Community Development is more than a positive approach; this kind of movement
derives power from relationships between people, and utilizes all members in order to become a vehicle for change. These movements develop momentum from empowering all stakeholders at the base of the community rather than being directed by a top-down approach. “Appreciative Inquiry doesn't only build relationships, it also levels the playing field and builds bridges across boundaries of power and authority” (Cooperrider & Whitney, 2015, p. 56).
Although they may have good intentions, there are very few people in elected positions
who fully grasp the complexities of these systems. Connecting average families to the small parts of the legislative process would help even out representation and drive policy that is prevention support based. This grassroots approach would allow practical information to flow back to individuals and community networks about how to leverage policy changes more effectively in order to be self-sustaining. This increase in policy and advocacy engagement is also crucial to increase accountability and leverage in the legislative process. These movements develop momentum from empowering all stakeholders at the base of the community rather than being directed by a top-down approach. “Appreciative Inquiry doesn't only build relationships, it also levels the playing field and builds bridges across boundaries of power and authority” (Cooperrider & Whitney, 2015, p. 56). The democratic involvement and internal focus used within this approach enables “investment, creativity, hope and control” (Kretzman & McKnight, 1996, p. 27).
Is this type of change possible?A case study of a community engagement project in Oregon shows us a very successful process for empowering families that have children with disabilities within a complex and marginalized setting. In this project, the Oregon Leadership Education for Neurodevelopmental and Related Disabilities (LEND) Program teamed up with families of children with disabilities in the community and city officials to engage in a process of asking families: “What are the strengths of the communities?” And then asking, “What challenges do you encounter in the community?” (Vargas, et al., 2012).
This process took some time, money, and energy to set up, but once it was; the professional trainees and city officials were able to build trust and enhance communications. These providers now see these communities as resources for support, rather than another group making demands (27).
The process was beneficial to all of the participants. The trainees who participated in the
community engagement process found it to be transformative in their professional development. They were able to experience barriers the community faced first-hand. Being engaged in the community gave them the opportunity to understand the real-world challenges that accompany a family with a child with disabilities. Logistic and environmental challenges are usually forgotten in a clinic. (Vargas, et al., 2012). This process allowed successful collaboration to tackle barriers to accessing services and healthcare in the community. The committee also worked to incorporate children with disabilities into local events and ensure that language and cultural needs were addressed. This process used an approach much like ABCD in order to create a more accurate assessment of the community.
The partnerships fostered the conditions in which the community itself, rather than outside experts, could determine and set the agenda and effectively transform their lives. The basic empowerment the families generated through the process enabled the development of powerful advocacy skills to drive policy. The professionals who participated benefitted greatly from being able to enhance their understanding of the perspectives of diverse, racial, cultural, and linguistic backgrounds and to value the inherent wisdom of the community members. Marshall Ganz, the social organizer who worked with Cesar Chavez to successfully organize migrant farmworkers, recently spoke on the economic evaluation of policy by saying, “When we price these things, we undermine them really” (Moyers & Company, 2013). This statement is very powerful when applied to the lives of people affected by developmental disabilities. The focus is spending, services, providers, and money—but the more important things—those that hold the most value, are rarely discussed. When systems and budgets are
discussed for legislative policy—what is notably missing—are the people themselves: their viewpoints, stories, potential opportunities, and the moral imperatives that underlie these services. The people get lost in the policies of the system itself, and we forget to consider that if services are delivered properly—people will be allowed to grow to their full potential—which yields compelling value beyond any dollar figure.
If we empower people to tell their stories, like the community in Oregon, we can personalize this complex system and create a genuine narrative to drive meaningful change. Marshall Ganz explains what differentiates successful movements from special interest groups. The difference is that: “movements have narratives, they have stories, they are not just about rearranging economics and politics, they also rearrange meaning. And they are not just about redistributing the goods, they are about figuring out ‘what is good?’” (Moyers & Company, 2013).
Finally, we can find reason for hope from the origins of our current system within California. The Lanterman Act was created by a group of mothers of children with intellectual disabilities, who were able to leverage their vision and ideals and transform them into groundbreaking civil rights for people who held very little voice or power within society. The Lanterman Act was established despite the imbalances of power held and the policies that were enacted around the same time.
The promises in the Lanterman Act are as important today as they were in 1969—but there is no way that just one sector can ensure that these rights, opportunities and protections will be in place for the people who can benefit from them most and who may rely on them the most. It will take a collaboration of our community assets and a positive approach to improve the system in order to realize progress for the great challenges our future children will face. We've revolutionized perceptions and changed the system before. I believe we can do it again.
------------ Updated: June 20, 2015 -----------
Autism Speaks. (2012, October 22). What is Causing the Increase in Autism Prevalence? Retrieved June 13, 2015, from Autism Speaks, Official Blog: http://blog.autismspeaks.org/2010/10/22/got-questions-answers-to-your-questions-from-theautism-speaks%E2%80%99-science-staff-2/
Centers for Disease Control and Prevention. ( 2015, February 26). Autism Spectrum Disorder (ASD). Retrieved May 3, 2015, from Centers for Disease Control and Prevention: http://www.cdc.gov/ncbddd/autism/data.html
Cooperrider, D. L., & Whitney, D. (2015). Appreciative Inquiry: A Positive Revolution in Change. San Francisco: Berrett-Koehler Publishers.
Department of Developmental Services. (2015, January). LANTERMAN DEVELOPMENTAL DISABILITIES SERVICES ACT AND RELATED LAWS. Retrieved June 13, 2015, from dds.ca.gov: http://www.dds.ca.gov/Statutes/docs/LantermanAct_2015.pdf
Disability Rights California. (2014, July). 2014 Budget Summary. Retrieved June 13, 2015, from disabilityrightsca.org: http://www.disabilityrightsca.org/legislature/Budget/2014/Budget%20Summary%202014%20July%20final.pdf
Kanner, L. (1954, June 22). DOCUMENT An early case of autism. Retrieved June 13, 2015, from Los Angeles Times: http://documents.latimes.com/early-case-autism/
Kretzman, & McKnight. (1996, Winter). Assets-Based Community Development. National Civic Review , 85 (4).
Mandell, D. S. (2014). Storming the Ivory Tower: Using Community Partnerships, Policy
Levers, and Other Sneaky Tricks to Improve Outcomes for People with Autism. University of Pennsylvania, Perlman School of Medicine. Sacramento: UC Davis MIND Institute Distinguished Lecturer Series.
Mathie, A., & Cunningham, G. (2003). From clients to citizens: Asset-based Community Development as a strategy for community-driven development. Development in practice, 13 (5).
Moyers & Company. (2013, May 10). Marshall Ganz on Fighting for Social Change. Retrieved May 26, 2015, from Youtube.com: https://youtu.be/r-vmsUoNRqc
Ozonoff, S., Dawson, G., & McPartland, J. (2002). A parent's guide to Asperger syndrome and highfunctioning autism. New York, NY: The Guilford Press.
Vargas, C. M., Arauza, C., Folsom, K., del Rosario Luna, M., Gutierrez, L., Frerking, P. O., et al. (2012). A Community Engagement Process for Families with Children with Disabilities: Lessons in Leadership and Policy. Matern Child Health, 21-30.
Zarembo, A. (2011, December 13). Warrior parents fare best in securing autism services. Retrieved June 13, 2015, from Los Angeles Times : http://www.latimes.com/local/autism/la-me-autismday-two-html-htmlstory.html