a greater nation of your country, and a finer world to live in."" - Martin Luther King, Jr.
Although I had already spent the majority of my working life in the fields of social services, advocacy and developmental disabilities, my true education and understandings in all three areas began 20 years ago this coming July.
About a month after seeing my youngest biological child graduate from university, I became a parent to a 26 month old who was about the size of an 8 month old. Who just happened to have been born with both genetic and associated ever emergent medical disabilities.
Because of my background, I entered this new parenthood with few qualms about maneuvering the “system” and with a solid knowledge base on developmental norms, interventions & advocacy. In short, I thought I knew it all.
HA.
Oh I knew all the text book and practical applications regarding varied disabilities etal. What I was not prepared for was the emotional, the medical, the reams of paperwork, the terror, and the tears-all the oftimes harsh realities of 24/7 battle living in the near invisible world of those with disability.
Fortunately and sometimes unfortunately, I am an eldster who has been around long enough to see hard fought for battles won for those born with or who acquired disability. Over 40 years of struggle and advocacy and persistent determination just in my adulthood to ensure educational rights, barrier free workplaces/society, inclusion, self determination, the removal of healthcare insurance pre-existing conditions and so much more.
Over 40 years for the small gains achieved while the disability population grew.
Over 40 years of blood, sweat and tears in community after community throughout this USA- now threatened by the current administration.
Factoids:
https://www.cdc.gov/ncbddd/developmentaldisabilities/about.html
Recent estimates in the United States show that about one in six, or about 15%, of children aged 3 through 17 years have a one or more developmental disabilities
Developmental disabilities are a group of conditions due to an impairment in physical, learning, language, or behavior areas. These conditions begin during the developmental period, may impact day-to-day functioning, and usually last throughout a person’s lifetime
emphasis added
2015 CDC report:
https://www.cdc.gov/media/releases/2015/p0730-us-disability.html
In the United States, one out of every five adults has a disability, according to a new study published by the Centers for Disease Control and Prevention. The most common functional disability type was a mobility limitation – defined as serious difficulty walking or climbing stairs -- reported by one in eight adults, followed by disability in thinking and/or memory, independent living, vision, and self-care.
Snip
“We are all at risk of having a disability at some point in our lifetime,” said CDC Director Tom Frieden, M.D., M.P.H. “Health professionals and health care systems need to meet the needs of this growing population.”
emphasis added
Factoids:
Current federal investments do not come close to meeting the needs of a growing and aging population of Americans with disabilities. Instead of investing to address this gap, the proposed budget represents an aggressive retreat from a decades-long, bipartisan commitment to supporting the health and independence of people with disabilities.
People with disabilities, especially those with severe disabilities, often rely on a complex array of supports across many areas of public policy to lead successful and productive lives in the community.
The following is a summary of some of the significant cuts to those with disabilities if the American Heath Care Act (AHCA) is approved:
* More than $600 billion in cuts to Medicaid, the health and community living program millions of people with disabilities rely on for medical care and social supports. This will impact all the waivers in my state- GAPP, Katie Beckett / Deeming, NOW/ COMP, CCSP, ICW, etc. This will impact all future spending of Medicaid and increase the current waiting lists for services.(Most states have up to a 20 year wait list already!)
* Over $72 billion cut from Social Security disability programs.
* A $47 million cut that would eliminate the Leadership Education in Neurodevelopmental and Related Disabilities (LEND) program administered by the Health Resources and Services Administration. Today, in 52 programs across 44 states and 3 U.S. territories, thousands of students, parents, and clinical professionals are receiving interdisciplinary training to improve the health of children with disabilities. LEND graduates have provided 81,167 diagnostic evaluations to children across the country with autism or other developmental disabilities, up from 55,777 just two years prior.
* $35 million cut from Centers for Disease Control and Prevention efforts in the surveillance and prevention of developmental disabilities. (This also includes cuts to childhood cancer research)
* Nearly 20 percent cut from National Institutes of Health funding for research on the causes of and successful interventions to address disabilities.
* Funding to states for Councils on Developmental Disabilities, independent living services, and traumatic brain injury services would be eliminated, and replaced with a new grant program with less than half of the current funding levels for the three programs.
AHCA will also eliminate key protections for people living with pre-existing conditions and allow insurers to offer restrictive plans that do not cover critical life-saving health services.
So what can you do? Please do not just rely on others to communicate a stand. Every voice is so critically needed.
- Call your congress critters in DC (866) 426-2631
- Text "RESIST" to 50409. It will look up your senators based on your responses to prompts, then allows you to type a message that will be faxed to their offices.
- When posting in social media use these hash tags:
#NoAHCA #NoCapsNoCuts #SaveMedicaid #UniteOurVoices
- Tell the critters that Block grants and per Capita Caps will have a critically negative impact on individuals with disabilities.
- Remind them that “We are all at risk of having a disability at some point in our lifetime..”
- And perhaps leave them this timeless quote:
"The ultimate measure of a man is not where he stands in moments of convenience and comfort, but where he stands at times of challenge and controversy" - Martin Luther King, Jr.
Thank you all in advance for reading and for any action on behalf of those whose voices are seldom heard.
*Further resources for some disability factoids, stats, understandings:
2016 Disability Statistics Annual Report (PDF)
https://disabilitycompendium.org/sites/default/files/user-uploads/2016_AnnualReport.pdf
and
Researchers from the Centers for Disease Control and Prevention (CDC),in collaboration with researchers from the Health Resources and Services Administration (HRSA), have published a new study in Pediatrics: “Trends in the Prevalence of Developmental Disabilities in U.S. Children, 1997–2008.” This study determined the prevalence of developmental disabilities in U.S. children and in selected populations for a 12-year period. You can read the abstract here
