The Need for Long-Term Support Services -- July 2019

      Any healthcare plan that purports to be available and affordable for everyone should include provisions for long-term medical expenses, aka Long-Term Support Services. These services include personal assistant services, durable medical equipment, long-term therapies, and maintenance drugs. The California Regional Center System can serve as a model for this. 

      For many people with disabilities, Long Term Support Services can be very costly. In recent years, personal assistant services expenses for me and my wife exceeded $100,000 annually. 
 
      Currently, Medicaid is the only healthcare plan that funds long-term medical expenses expected to be needed more than a few years. Medicaid is only available to people living at or near poverty levels. Many people with disabilities don't work for fear of losing healthcare and the long-term support services they need to survive. They remain beneficiaries of the Supplemental Security Income (SSI) or Social Security Disability Insurance (SSDI) Programs primarily to qualify for Medicare and Medicaid.  
 
      Many programs aim to assist people with disabilities to attain employment and receive the services they need. They differ by state, county, and city. They are administered by different public and private agencies. They depend on many factors, including beneficiaries' age, disability, income, assets, onset age of impairment, the reason for disability, military status, etc. These programs are very interdependent and often are too complicated for people to understand. Many experts, websites, and businesses try to help people through these 'disability benefits' labyrinths. 
 
      Unfortunately, there is no comprehensive process for people with disabilities to ensure our financial health and get the long-term support services we need. As an example, only 5 years ago, one of my attendants pointed out that my wife and I, who both have Cerebral Palsy, qualify to be California Regional Center System clients. This agency funds Long Term Support Services for people with developmental disabilities, regardless of income or assets, if no other agency does so. Cerebral Palsy is a developmental disability.  I think I am well connected in the disability community and pretty knowledgeable about disability-related programs. Not realizing the Regional Center System's advantages illustrates the need for a simple-to-understand universal healthcare system that includes Long-Term Support Services. 
 
       Annually, millions of dollars are spent trying to improve employment opportunities and the financial health of people with disabilities. Given the dismally low number of people who leave Social Security Disability Programs due to finding gainful employment, it is surmised that any increase in Medicare and Medicaid cost may be offset by increased tax revenue and savings in other government programs. It would be interesting to understand what effect of simply enabling this cohort to keep their Medicare and Medicaid regardless of the income or assets they garnered.  
 
      It is encouraging to see that most people in this nation now recognize the need for universal healthcare. Long-term medical expenses must be an integral part of any healthcare system.