I’d like to start a letter-writing, emailing, phone-calling campaign to state elected officials regarding protocols for eligibility in NYS for OPWDD, but each state has something similar, so, no matter where you live, this is important (look up your state agency). Folks born with genetic defects causing permanent disabling conditions should not have to be recertified when services are needed.
Kids born with Trisomy 21, for example, have genetic testing done at birth proving for all time that an extra chromosome is present in ALL somatic (body) cells. There should be medical documentation attesting to this fact. Kids through their 13+ years in school have psychological testing done every three years and IEPs developed at least once a year proving the impact of the disability on physical and mental functioning. No one should later question the need for services as they transition into adulthood. Save everything documentation-wise.
Social Security is a federal program and their protocols also need to be changed. I have been told more than once, and by more than one SSA staffer, that “Down Syndrome may go away or get better”. These folks clearly need an education in basic biology/health. Contact congresspersons as well. All information may be found online to get contact info in your state, as well as DC. The names of personnel are available too so you may write directly to the individual responsible to meet your needs. Our taxes pay their salaries and their ongoing benefits even if they only serve ONE term.
I know this is somewhat time consuming, but I urge you to devote even 5 minutes a day, forever, to letting these people hear your voice. Silence is the enemy. Tell your elected official, if they do nothing, you will never vote for them again. Can you imagine the impact if “we the people” took our democracy seriously.
