published in the Republican January 2021

This month, a new President takes control of our government.  In his disability plan, Joe Biden vowed to appoint a director of disability policy.  The person appointed should be aware of disability issues that are important to people with disabilities, from health care to Social Security and special education.

Another important issue is to deal with COVID-19, especially in group home and nursing home settings where the infection flares up and grows.  We also need to ensure that proper equipment is provided for home and community based services.

In the past there have been orders made to disability policy that have harmed people with disabilities and their rights that need to be reversed. One example is undoing payroll tax deferrals that affect SSDI and SSI payments.  Another example is work requirements for people on Medicaid that put them at risk of losing coverage.

There are several other issues that need to be considered, starting with affordable health insurance.  SSI and SSDI need to be updated to allow people with disabilities to earn and save money without losing their benefits.

More importantly, advocates need to ensure that people with disabilities are guaranteed the right to live and blossom in their own communities.

published in the Republican December 2020

The year 2020 will go down as a historic year that people will be talking about for years to come.  Through the year, the nation, along with the rest of the world, has been dealing with a health crisis called COVID-19.

Starting in March, states everywhere were going into lockdowns and quarantines, from schools closing to businesses shutting down.  We saw a flurry of activity resulting from stores being sold out of many household items.  We were ordered to wear facemasks and practice social distancing.  The end result was severe financial difficulties for people out of work.  Schools were forced into conducting online classes.  On the other side of the coin, many medical professionals were overworked caring for virus victims.

Due to scientists developing a vaccine at record speed, we are hopeful that the vaccines will help solve the health crisis.  This experience has taught us to put our health and safety first while becoming more adaptive.  More importantly, we should be more positive and grateful for what we have.

published in the Republican December 2020

In Florida, Chris Nikic, a 27 year old young man with Down Syndrome, set a new world record when he became the first athlete with Down Syndrome to win the Ironman Triathlon.

He finished a 2.4-mile swim, a 112-mile bike ride and a 26.2-mile run in 16 hours and 46 minutes.  In order to gain the title of Ironman, he needed to complete the race in seventeen hours.

Over his life he has faced many different obstacles.  But he did not let them stop him from achieving in his life.  His father’s goal for his son was to improve by one percent every day.  A strong performance in the Special Olympics gave him his first taste of competition.  His next goal is to compete in the Ironman World Championship.

This is a perfect example of someone making their dream a reality with hard work and determination.  With the right mindset, anything is possible.

published in the Republican December 2020

A man with autism had his rights stripped due to guardianship.  In November, a judge terminated guardianship in favor of using a less restrictive method called supported decision making.

Supported decision making allows people with disabilities to make choices about their own life with support from people they choose, such as family, friends or professionals whom they trust.  It is considered an alternative to guardianship.  The point is to allow the person with disabilities to have a say in their own life instead of having no say. 

Just because someone has a disability doesn’t mean they don’t have their own preferences and desires.  They have a right to be involved in deciding where they want to work and live.  The support system can help them educate, research and make reasonable decisions.  The goal is to make the individual feel valued and part of their own life.  Being independent means having control of one’s life.

This process can increase pride and self-confidence while increasing their own happiness.  This is also a way to gain new experiences while expanding their knowledge.  It can also teach an individual how to work with others while gaining communication skills.  More importantly, they can become their own advocates.

published in the Republican December 2020

Cerebral palsy is a group of disorders that affect movement and muscle tone.  It is usually caused by damage to the brain during or before birth.  Cerebral palsy can range from mild to severe disability.

For example, it can cause impaired movement, loss of control over limbs, rigid muscles, abnormal posture, involuntary movement, unsteady walking andbalance issues.

The National Institutes of Health conducted a study that was published in the journal Nature Genetics.  The study found that fourteen percent of cerebral palsy cases might be linked to genetics.  Michael Kruer, a neurogeneticist at the PhoenixChildren’s Hospital and the University of Arizona College of Medicine, said, “Our results provide the strongest evidence to date that a significant portion of cerebral palsy cases can be linked to rare genetic mutations, and in doing so identified several key genetic pathways involved.”

As the study goes on, it has been determined that many of the genes are important to the brain wiring.  These genes are involved in the early stages of development and may be linked to intellectual disabilities, autism or epilepsy.  Kruer also stated, “We hope this study can give peace of mind to parents who may have been told over the years that there must have been some kind of problem during the pregnancy or delivery to cause their child to have cerebral palsy.  Our study has implications for genetic counseling for parents who have a child with cerebral palsy, in helping determine the chances of a second child being similarly affected.”

published in the Republican December 2020

A policy that allows people with developmental disabilities to be paid less than minimum wage in sheltered workshops has been under attack by advocates for being discriminatory.  The US Commission on Civil Rights wrote a report saying that the policy should be ended.

Some families say that sheltered workshops enable the disabled individual to gain a sense of self worth.  Advocates of abolishing subminimum wage say that it holds people with developmental disabilities back from achieving financial independence and advancing to traditional employment in the overall workforce.

The report found that “failures in regulation and oversight…have allowed and continue to allow the program to operate without satisfying its legislative goal to meet the needs of people with disabilities to receive supports necessary to become ready for employment in the competitive economy.”  Rie Kennedy-Lizotte, the director of employment policy for the National Association of State Directors of Developmental Disability Services, said, “I have seen the issue raised more than once to eliminate subminimum wage, but it’s never gotten to this level of action.”

Several states have outlawed subminimum wage.  Some of the states are New Hampshire, Alaska and Maryland.  The cities of Seattle and Reno have also terminated subminimum wage.

In 2019, a bill labeled the Raise the Wage Act passed the House of Representatives but has not been deliberated on in the Senate.  Senator Patty Murray of Washington said, “For too long, some workers with disabilities have been relegated to subminimum wage jobs where they are segregatedfrom their peers and paid far too little.  As this report shows, this is a violation of their civil rights – and we need to act now to end it.”