Wednesday, October 15, 2008

Tax and Public Benefit Eligibility Reforms Needed to Help Families Affected By Autism Avoid Poverty

Today is Blog Action Day. Bloggers worldwide have united to blog about poverty. Many families affected by autism are currently facing poverty. Many more families are only a few paychecks away from financial ruin. I am hopeful that lawmakers and policymakers will read this post and make some changes to both public benefit eligibility criteria and tax laws. Families of children who have autism should be able to both obtain treatment necessary to improve their children’s lives and meet their other financial obligations. Parents should not have to choose between helping their children thrive and keeping a roof over their heads.

Autism treatment is expensive. The cost of ABA, speech therapy, occupational therapy and other therapies, interventions and equipment used to improve the functioning and quality of life of people who have autism typically costs thousands of dollars. In fact, the cost of intensive autism treatment could easily exceed a typical family’s annual housing, transportation and food costs combined.

Not surprisingly, many families affected by autism cannot afford to provide the treatments their children need. Overwhelming autism treatment costs combined with gaps in health insurance coverage lead some families of children who have autism to refinance mortgages, sell cars, deplete savings, make hardship withdrawals from 401ks and file for bankruptcy. University of Missouri researcher Deanna Sharpe reported cases of families skipping meals in order afford autism treatment.

Families should not have to choose between eating or obtaining treatment for their children. Policymakers need to reevaluate eligibility criteria for public benefits, taking into consideration that families raising children with autism have excessive financial burdens that typical families do not incur. Special guidelines need to be implemented for families affected by autism, including raising income limits and using net income rather than gross income to determine eligibility for SSI, LIHEAP and other income-based financial assistance programs.

Many families of children who have autism have to give up an income because a parent must become a full-time caregiver. Child care assistance benefits need to be made accessible to families of children with autism so parents who are able to can pursue part-time employment and so parents can afford respite care when needed.

In addition, lawmakers need to consider the exceptional expenses of families coping with autism when making tax reforms. Dependent care tax deductions and flexible spending account eligibility need to be restructured to take into consideration the needs of families affected with autism. In addition, families need to be allowed to deduct the full amount of autism treatment as a medical expense—not just that portion which exceeds 7.5% of their adjusted gross income.

Policymakers and lawmakers need to become knowledgeable about autism and its financial impact on families. Furthermore, they need to be willing to make changes in laws, policies and the tax code to keep families who are struggling financially because of autism from slipping into poverty.

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