People with Autism and the Budget Crisis
Author: Wendy Taormina-Weiss
Synopsis and Key Points:
The budget cuts that are proposed are coming at a time when the experience of autism has become a national health care crisis.
Main DigestThe prevalence of autism is continuing to rise, with an increasing number of families facing the reality that there will be cuts to both services and programs affecting people with autism unless we all take action. Tax revenues continue to decline during the current economic woes and the budget reserves are drained. Most states in America are proposing sweeping and deep budget cuts that will affect families through reductions in services that are proven and needed.
Autism - A developmental disorder that appears in the first 3 years of life, and affects the brain's normal development of social and communication skills. Autism is a physical condition linked to abnormal biology and chemistry in the brain. The exact causes of these abnormalities remain unknown, but this is a very active area of research. There are probably a combination of factors that lead to autism. Genetic factors seem to be important. For example, identical twins are much more likely than fraternal twins or siblings to both have autism. Similarly, language abnormalities are more common in relatives of autistic children. Chromosomal abnormalities and other nervous system (neurological) problems are also more common in families with autism. A number of other possible causes have been suspected, but not proven. They involve: Diet, Digestive tract changes, Mercury poisoning, The body's inability to properly use vitamins and minerals, and Vaccine sensitivity.
The cuts that are proposed are coming at a time when the experience of autism has become a national health care crisis, something that affects every single community in the nation. The current delivery system for services is often times unresponsive, ineffective, inefficient, and inappropriate where provision of quality and seamless services over a person with autism's lifespan is concerned. The evidence is particularly noticeable in the adult services sector.
No one with autism should have to endure a delay in accessing services that have the potential to greatly improve their life. There is a clear and present need for the expansion of access to interventions, treatments, and services related to autism. With the understanding that reducing the deficit is important to everyone, it is also important for us to continue working hard to make sure that cuts to the deficit are not done at the expense of those who are commonly underserved in society.
Cuts and Reductions to Medicaid and Long-Term Community Services
Preservation of the most essential programs for people with autism, intellectual, or developmental disabilities is vital. Medicaid is a lifeline for the majority of people with autism and other forms of significant disabilities. Medicaid is the largest funding source of long-term family and individual supports in the state and federal developmental disabilities systems and is, for many people, their main source of health care payments.
The unfortunate fact is that most states are cutting Medicaid spending; something that means hundreds of thousands of people with intellectual and developmental disabilities will be forced to stay on waiting lists across America. Just as troubling is the loss of staff members who are qualified when their jobs are eliminated because of cuts to Medicaid. A number of services are at risk, to include:
- Personal care
- Clinic services
- Prosthetic devices
- Case management
- Physical, occupational
- Rehabilitative services
- Self-directed personal care
- Speech and audiology therapies
- Home and community-based services
- PRTF (psychiatric) for children under 21
- Program for All-Inclusive Care for the Elderly (PACE)
What this means is that families with loved ones who experience autism, intellectual, or developmental disabilities who have desperate needs will lose or experience severe cutbacks. The cutbacks will range from 16 to 32% in a number of programs such as health insurance, intensive individual support services, therapeutic integration services, regular day habilitation, early intervention programs, specialized programs, Medicaid eligibility, and IFSP/IEP services. Cutbacks will affect programs like respite care, family training, environmental accessibility adaptations, and residential habilitation. The cutbacks will also affect targeted case management and service coordination for children with disabilities.
How to Fight Back
The need for family members of people with autism, intellectual, or developmental disabilities to call their legislators has never been greater. It is important to urge legislators and their staff members to do whatever it takes to maintain the current level of services for people with autism and other intellectual and developmental disabilities. Tell your legislator your personal story.
Tell your legislator how long you or your loved one has been on a waiting list. Tell them what life has been like during the waiting period and share every detail with them. Share with your legislator how the program you or your loved one uses currently receives funding, and how the program services and supports makes life more meaningful; include every detail!
Describe to your legislator what you or your loved one would have to endure if those services were cut after you have waited so long. Tell your legislator how devastating it would be and include personal details. Describe why the service is so valuable and important, and what would happen if the service were reduced or even eliminated and the effect it would have on you or your loved one.
End the conversation with your legislator by telling them that you understand the challenges they face where reducing and balancing the deficit are concerned. Tell your legislator that you share their goals related to the deficit. Most importantly, tell your legislator that cuts to health care funding do more harm than good.
Actions you can take now include:
- Calling your elected officials
- Attending a town hall meeting
- Stopping by the offices of your elected officials
- Sending personalized emails directly to your elected officials' offices
- Recruiting as many people as you can who are affected by this crisis
- Joining with community organizations that are affected by the proposed cuts such as UCP, The ARC, TASH, or Easter Seals
Working Towards the Common Good
Everyone wants a government support system that is more effective and responsive, yet we also have to deal with a government that has less money to work with and will most likely have to cut programs. It simply makes good sense for people to present a collective agenda to help the government address the financial aspects of support services. If people do not present a common message it may confuse government officials who have differing positions and singular agendas. The end result may be that we are easily dismissed, or left out of decisions entirely.
Areas exist where not everyone agrees and that is okay. There are a number of organizations that are engaged in national advocacy efforts. There are underlying principles where people do agree. We need to find the topics we can gain consensus on and a shared multi-disability vision that will impact people of all ages.
Certainly we can find commonality in the need for an increase in services for adults and a more accountable and responsive public school system. People with developmental disabilities are denied their civil rights by the same systems that are in place to support them. We can find common ground related to civil rights that position us at the table where decisions are being made. What this will accomplish is to not make us, 'beneficiaries,' of decisions that are made without the input of groups that represent family members, self-advocates, and others who are affected by autism. We can agree on certain efforts, values, and advocacy positions that are in the best interests of people with autism, intellectual, and developmental disabilities.
Autism Research Institute
"Rates of Autism Spectrum Disorder (ASD) diagnosis in children are rapidly increasing to epidemic proportions, and are expected to continue to rise. Families and communities struggle to understand, and to cope with this challenge."
"If we don't present a common message, we confuse government officials with differing positions and singular agendas. In the end, we are more easily dismissed or left out of decisions all together."
Ryan's Plan for Medicaid, Medicare Mirrors Texas Bills
Ryan's congressional budget plan - so far trumped by Senate Democrats and the Obama administration "would replace Medicaid, the joint state-federal health insurance program for the disabled and impoverished children, with block grants to allow states to run the program as they see fit.
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