Testimony of DUSYA LYUBOVSKAYA
Before the New Jersey State Senate
Health, Human Services and Senior Citizens Committee
Autistic Self Advocacy Network
December 15, 2014
Dear Chairman Vitale, Members of the Committee:
My name is Dusya Lyubovskaya, and I am on The Autism Spectrum, and a representative of ASAN ( Autistic - Self - Advocacy Network) and I am a Home Health Aide ll which means that I am a Senior Home Health Aide with expanded experience in the nursing field .
I am writing this testimony in response to the S382!
I am testifying here because our autistic community is also concerned about this bill in terms of that parents who do not know how to communicate with their autistic child or otherwise disabled will be so desperate to help their child that they will be willing to assist with suicide because from their pov their child is suffering !
The truth is though that these parents cannot know if their child is suffering and I should quote the part about knowing !
Not all disabled people and children communicate verbally !
A lot of disabled people and children especially Autistics communicate using sign language or computer technology .
Unfortunately many parents do not know about this other way of communicating because because it does not come to their mind ( And that is not their fault! ) and or because some agencies that support families do not give out adequate information which is again not their fault!
A lot of agencies that support families are under educated about a variety of disabilities including autism ( No offense to anyone intended ) and so they are not able to offer parents the support they need to support their child or children .
And the same goes for doctors !
Doctors do not learn much nowadays in Medical school about disabilities or if they do then it is more old school , I dare say Frankenstein style .
I immagine a a desparate mother crying in front of her disabled son who is in a wheel chair and cannot speak and she wants to know how she can help her son , But she thinks it is impossible because her son does not speak ! She does not think about giving her son an Ipod to type on because nobody told her .
She cannot give him a piece of paper either because he does not have the fine motorics in his fingers so he cannot write and some parents do not even know that their son or daughter can also communicate by answering yes or no by simply closing his or her eye !
But again if this particular mother knew that she can give r son an Ipod and ask him first a simple question like if he like if he slept well and he could use the Ipod and answer the question by typing yes or no , That would be the happiest moment in their both lives and she would ask him then all the questions that she ever wanted to ask him !
Like what he thinks about during the day or what enjoys when she takes him out on a ride !
And her son and anyone elses daughter or mother or father or anybody else could say in their way what they want !
I would also like to add that there are parents and other immidiate members of the family who unfortunately do not really have the best interests of their disabled family member in mind although the said family member will tell everybody that he or she loves the said disabled brother , Sister , Mother etc... . Meaning that a sister of an a disabled person who communicates by opening or closing eye lids will deliberately missinterpret what the said disabled person said which is very common !
I have seen a lot of this as Home Health Aide where a disabled person has inhereted a house or money and the immidiate relative will and I will quote "pretend" to advocate for the best interests of the said disabled person .