By Wanda P. Felty, Family Advocate
The City Sentinel’s continuing series on OKSTABLE and related issues
An introductory note from Ellyn Novak Hefner:
Planning for your child’s future who has a disability has many different parts…guardianship, Special Needs Trusts and OKSTABLE accounts to name a few. Another part of planning are waivered services. For these waivered services there is a waiting list. Not many people have heard of the waiting list that we have in Oklahoma. As of of the first week of June there are 5596 Oklahomans on the waiting list. I asked a friend to write about the waiting list this month. The following article started as a short article highlighting the challenges for families during the COVID 19 crisis. After looking at the whole issue it was realized that it is greater than the current pandemic.
It has been a decades long attitude of acting as though people with intellectual disabilities and their families do not exist. My child is on the waiting list and has been waiting for more than 10 years to receive services. I asked Wanda Felty, a parent advocate to write about this group of Oklahomans who are left waiting. Wanda is a strong advocate for her child and others, like mine. She is also a fellow ambassador for the OKSTABLE account and continues to do outreach for the state treasurer, Randy McDaniel, in telling families the importance of this account to a citizen who has a disability.
Oklahomans with intellectual disabilities are left behind on the Covid-19 stimulus checks, left alone with only family members, usually aging parents to support them, and left waiting because there is a wait of more than 13 years before they can receive Medicaid services.
Oklahomans with intellectual disabilities (ID) represent about 1-3 percent of the population. What we know about people with ID is they have a spectrum of abilities and disabilities. Many people with ID live independently in their own home, some are married with children. They work with minimal if any support, but like anyone else they may need assistance with some part of daily living.
Then there are some people with ID who need more intensive support like assistance with not only preparing meals but with eating as well. They may need help with personal care and toileting, or personal hygiene needs. And then there are people with ID anywhere between these two spectrums of support needs.
The most important thing to know about people with or without disabilities, including ID, is we are more alike than different, and disabilities are a natural part of the human experience.
Left Behind… In mid-March everyone’s life changed. The COVID-19 virus started threatening what we all knew as “normal life.”
Things started changing with the President’s Executive Order prioritizing access to medical resources and supplies due to COVID-19. Shortly after, Oklahoma’s Governor declared a “Safer at Home” order. Within a few short weeks, unemployment skyrocketed to levels that have not been seen since the Great Depression.
Families worried how they would pay rent, buy food, and stay safe during this national pandemic. Fear and anxiety affected many families in Oklahoma, especially families who care for an adult with intellectual disabilities.
In a typical, pre-COVID day, parent-caregivers of adults with ID would head off to work and their adult child would head to their supported employment, workshop, or adult activity center. Before Gov. Stitt issued his order, many of the day activities were shutting down, trying to protect those they served.
Adult activities centers closed, workshops closed and eventually the support employment programs closed, too.
It was in some ways similar for children in school or daycare. But adult children who are 25, 30 or even 40 years old, are not typically the primary responsibility of parents, by this age they are usually navigating life alone, if not looking after their parents in situations like this.
During this nationwide pandemic crisis, the Federal Government started looking for ways to relieve some pressure for unemployed families, small businesses and communities who were suffering greatly. The first relief came in the form of the Family First Coronavirus Response Act, which assured access to the COVID-19 testing, unemployment for anyone who lost a job or income due to the COVID-19 crisis and offered increased funding to those on food assistance through the SNAP (Supplemental Nutrition Assistance Program).
This was great for those who qualified, but people with ID who worked in workshops or most supported employment programs did not qualify for unemployment assistance. A second round of assistance came in late March, the CARES Act (Coronavirus Aid, Relief and Economic Security Act). This was a huge help. It that provided stimulus checks to all Americans – well, almost all Americans.
This Act excluded any American over the age of 16 and who is listed as a “dependent” on an IRS tax return. This meant all adult Oklahomans who lived with their parent or family member, who needed assistance with daily living tasks, regardless of their age, did not receive any kind of assistance during the crisis. It was as if these people, these Oklahomans with disabilities, were invisible to the U. S. Government.
This was insulting and disheartening for not only the families but for the people themselves. What is even more insulting, and trivializing to the care and support families provide adult children with ID, is that those who live in private institutions — Intermediate Care Facilities for Individual with Intellectual Disabilities (ICF/IID) instead of living with their families — received the full stimulus check.
People who live in ICF/IID have 24 hour paid caregiving. Their cost of living is covered by Medicaid. This is not meant to imply Oklahoman’s living in ICF/IID’s do not need or deserve the stimulus check, it just shows how it demoralizes families who are doing the “work” of the Medicaid system, leaving them left out and left behind. Recently, a U.S/ legislator mentioned that his college kids were left behind as well. The difference is, college students have the oppor t u n it y to earn wages and file their own income tax return but choose to not do so.
C h i l d r e n who are college students deserve to be recognized by the government as humans too, but do not confuse the difference between a college student and their need for parental support with the support needs of adults with ID. Most college students will say it is just the financial support they need, while the needs of many adults with ID include intense daily support with simple life tasks like bathing, eating and general well-being. These two populations even though both were left behind by the CARES Act, are not the same when it comes to the support they need from their parents.
Left Waiting …
It is one thing to have the federal government leave someone behind but when your own state does the same thing or worse, it is devastating. Currently when Oklahoma people with ID apply for assistance for long term help through the Developmental Disability Services (DDS) Medicaid home- and community-based wavier, they are told to wait. They are not made to wait a week, a month, or even a year. They are forced to wait more than 13 years for this assistance.
The DDS Waiver is long term assistance that provides direct support to people with ID in their home or community. This support or assistance can be direct care to help the person gain or improve their independent skills, it can be job training or coaching, it can also be respite for their parent caregiver.
Families ask for help but are told to wait. So, what happens while they wait? The family is left to navigate life on their own. They may find an adult day activity center for daytime assistance, but many times the cost can be out of reach for these already financially strapped families.
In truth, most adults on the waiting list find no help, no assistance. Many times, after high school ends, one parent is required to stop working, causing a two-income family to go to a one income family.
Parents who have children with intellectual disabilities have the same desires and dreams when a child is born. Through life, those dreams tend to fade regardless of how hard the parent works to stay positive and focus on their child’s abilities instead of disabilities. But as a child ages, the differences from their peers or siblings becomes more and more apparent.
When their child enters public school, the parent meets with the school to identify what the student needs to work on in the coming year. It is not usually intentional but what generally happens in these meetings is disabilities are highlighted as the skills to work on through the year. Imagine this happening once a year and sometimes more in each school year. As this happens year after year, the dreams and the vision parents once had when their child started school gradually fade away. Once graduation comes, the parent is faced with caring for and supporting their child for the rest of their life.
Parents do this not because a society and government tell them, but because this is their child, their family, their loved one. As parents age, the once strong and determined two-parent home often becomes a oneparent home, usually leaving the wife or mom to care for an adult child in their aging years.
It is this group of families that are too often left behind. The COVID-19 pandemic has created a perfect showcase for this example.
There is a mother/caregiver who is in her 70s providing care to her 50-year-old adult child. Her adult child needs help with all daily living tasks most everyone takes for granted like toileting independently, preparing and eating meals, dressing, and bathing.
Typically, this mom would have some outside help come in to care for her child while she did community errands like shopping and picking up prescriptions. Once the pandemic hit, this mom was stuck and alone.
She could no longer make simple trips to the grocery story, or to pick up personal care items or medications. She needed these items, but no one was around. It was too risky to have a person come in and sit with her child for fear of bringing the virus into her home.
This is happening all over Oklahoma, with families left alone to figure out how to protect their adult child while still p r o v i d i n g food or needed medical care. These families are your neighbors, rarely seen in public. They are not hermits or shy, they are alone. Alone is how these family feel. They often wonder does anyone know if they exist or does anyone even care?
People with intellectual disabilities are not much different than you and I. We all need help at some point in life, we all need training, and care, but most of all we all need to be respected. The Oklahoma standard says we leave no one behind, we turn our back on no one and no one stands alone.
It is time Oklahomans with intellectual disabilities and their families are honored and respected with that same standard.
For more information on the waiting list go to waitinginoklahoma.org.