Steven, Brandon and Karen LeMaster
Karen and Steve LeMaster have been married for more than 25 years. Despite being encouraged every step of the way to separate their family for the sake of their son, they chose to stay together. Karen explains that staff at “The Social Security department in El Paso constantly told me to divorce my husband and quit my job. That way I could have everything I need for Brandon.”
Their 16-year-old son Brandon is diagnosed with autism, Asperger’s syndrome and obsessive compulsive disorder. They placed Brandon on the Home and Community-Based Services (HCS) waiting list when he was 3 years old, and it was 13 years before they received services.
During the 13 years spent on the waiting list, the family suffered severe financial strain and declared bankruptcy twice due to high medical bills and the inability to earn more money because of financial restrictions associated with the Medicaid eligibility requirements. When Brandon was five, Karen and Steve had to change their respective jobs to intentionally earn less money to reduce their salaries by $14,000 a year. This action resulted in a combined take home pay of $2,000 a month.
These job changes, coupled with Brandon’s preexisting medical conditions, resulted in higher monthly premiums ($420 a month) for medical insurance. The LeMasters spend $500 a month in prescription and therapy co-payments for Brandon. They are not able to afford the co-payment for Steve’s prescriptions related to his diabetes, so he goes without so that his son’s needs are fully met. Steve states, “We’re just trying to survive here.”
Despite their personal sacrifices, the LeMasters frequently lose Brandon’s Social Security and Medicaid due to earning as little as $12 over the monthly threshold. When this occurs, they stop all of Brandon’s therapies since they cannot afford the expense. Karen states, “Dealing with the Social Security office has been the greatest stressor of our lives.” They gave up Social Security benefits for Brandon for two years because they didn’t have the energy to fight with them anymore. When they came off the waiting list, they had to re-apply for Social Security and Medicaid to qualify Brandon for waiver services.
Now that they have had HCS services for a year, the LeMasters both comment, “It is severely lacking.” Brandon needs social skills and vocational training if he is to be prepared for community living, but the HCS program is not providing these essential services. Additionally, the HCS providers are unable to secure consistent staff coverage to meet Brandon’s needs.
The LeMasters point out that “Brandon thought all his staff was leaving because they didn’t like him.” When he begins to bond with staff, they often leave to earn a higher rate of pay elsewhere, and Brandon loses yet another person in his life. At one point, he threatened suicide because this was so difficult for him to deal with; his parents got him into therapy.
Karen adds, “We’re struggling to make a better life for our son; that’s all. We’ve never been on a family vacation and the future is scary for us. It never stops for our family.”
Steve and Karen both hope that Brandon will have the opportunity to live in his own home and receive the support services for job training and independent living. Brandon wants to graduate high school and college so he can become a crime scene investigator or a chef.