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← COVID-19 Response - NEXT for AUTISM - Patrica Wright

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Ukazujem Revíziu 1 vytvorenú 06/29/2020 od Marti Berg.

  1. Let's start with a general introduction
    where you tell me a little bit more
  2. about your organization because I don't
    know much about it.
  3. Sure so Next for autism is an organization
    that's dedicated to improving the lives
  4. of people with autism. And we do that by
    developing and launching innovative
  5. programs. We have been doing that for
    about 15 years and we started with the
  6. support of developing a charter school
    that's currently in New York City.
  7. Certainly impacted by the COVID-19
    charter school that's in Harlem and
  8. then replicated to the Bronx and over the
    last 15 years we've developed additional
  9. programs for recreation and leisure and
    then community living and employment.
  10. Again really kind of committed to quality
    programming for people with autism.
  11. Right now, we are primarily focused on
    the needs of teens and adults
  12. with disabilities and autism.
  13. How do your members, like all the
    people with autism cope with these
  14. uncertainties and how do you
    help them cope?
  15. That's such an important issue.
    I think that we're all trying to
  16. engage in the best resilience we have
    the strategies of self regulation, and
  17. trying to you know, I think those of us
    that are considered typically developing,
  18. we're struggling as well. So for people
    with autism it's helping them use some
  19. of those compensatory and anxiety
    reducing strategies that we hope that
  20. they've learned. Next for Autism has
    been kind of releasing some content
  21. digitally on here are some strategies
    and you know one of the things we
  22. talk about is we're all working from home.
    What if you are an employee with autism
  23. who's currently working from home and
    that's a huge disruption in routine.
  24. So, do I know how to ask for the
    appropriate support from my supervisor.
  25. Do I know what to do when, meanwhile
    the supervisor is dealing with their own
  26. repertoire of challenges. But really how
    do we develop those resources, that
  27. content support information
    to those adults.
  28. Are there specific strategies, how do you
    protect them? I don't know if like some
  29. of them are also in the high risk group?
  30. What we also think about again is what
    are the effective supports that would
  31. allow someone to continue to engage in
    their daily life to the
  32. greatest extent possible, effectively.
    So that is making sure that they
  33. have their communication supports and they
    have information and you know a lot of
  34. people with autism benefit from visual
    information. Can we write things down for
  35. them? Can we make sure that there's lists?
    I'm looking at a list right now.
  36. That's good for all of us. I think that's
    also something that people with
  37. autism really benefit from. So how do we
    help families that are impacted and the
  38. professionals that are supporting them.
    And supporting people with autism
  39. with this disrupted routine. You know my
    routine has typically been; I get up,
  40. I maybe go to a day program for the
    day, I come home, I see my family on
  41. the weekends. Which now I no longer am
    able to see because we're distancing in
  42. that way. So that is a huge routine
  43. How has this whole pandemic impacted
    your organization? If you tell me a little
  44. about your usual everyday life and
    how this has changed?
  45. Our organization again, we have these
    partner programs that we work with
  46. that we've developed relationships
    with over the years.
  47. What we're doing right now is try to
    support those partner programs to
  48. be delivering the most effective
    supports possible. Those programs
  49. were all in person. Some of them
    have gone virtual and so that's
  50. something that we're trying to help with
    support with, were it through technical
  51. assistance, to financial support, all of
    those things.
  52. So the children from the charter school
    are to have the access to curriculum
  53. and there are people involved in the
    recreation activities
  54. can now do that online. But some of the
    programs are also community living
  55. programs so those programs aren't shut
    down, those are homes.
  56. You know so how do we support them and
    that was some of our effort with the
  57. relief fund was the protective equipment
    was one of their primary asks.
  58. We wanted to be able to deliver that.
  59. Did you get any sort of feedback from
    your members, like about how support
  60. them or did you get more questions
    or emails during that time right now?
  61. I think there's actually more engagement,
    because we're all trying to be supportive
  62. of each other and I think that's the
    benefit of having and engaged community.
  63. Well, what about this and does this work?
    We started a webinar series for employers
  64. because we knew employers were like well
    I want to support my employees with
  65. autism but I'm not sure how. We have 100
    slots every week in the webinar and those
  66. are free information sessions and they
    are packed, every week that
  67. session is filled up. So you know I think
    people are really hungry for information
  68. because they want to do it right. They
    want to do the right thing.
  69. And looking for resources and we're able
    to offer with the team at Next for Autism
  70. has a lot of experience, a lot of
    expertise. So, we're able to offer some
  71. of that support to people that maybe
    are engaged in the current work but
  72. may not have that extensive history.
    We want to make sure people have
  73. access to the right information.
  74. How has your personal routine
    changed because I guess you're
  75. at home, obviously right now. So what
    else did change?
  76. Yes I am. Yes so here we are talking on a
    computer. Which I think has become most of
  77. our, you know all those funny
    conversations about I'm Zoomed out.
  78. I think that's just trying to be as
    present with people as possible and
  79. engaging in this virtual work. I also want
    to say that there has been some, I mean
  80. I think that people are looking for silver
    lining because that makes us feel better.
  81. And I have heard from some of my friends
    with autism, adult friends, how they're
  82. like, you know this is actually, you know
    they're of course gravely concerned about
  83. health and welfare of their families and
    the community and themselves, but
  84. they also have said, you know I really
    always wanted to work from home, but
  85. my job didn't really afford that and now
    you know this is actually working
  86. out quite well for me. I really like this
    medium, I like having my autonomy,
  87. or my ability to do that. And I'm like
    okay, and I think that's true of
  88. many individuals. Right, there's pieces
    of this crisis that has allowed us a
  89. window into other creative opportunities.
    You know there's with crisis sometimes
  90. comes creativity and these creative
    solutions, for some, have become
  91. a silver lining.
  92. So I wanted to ask you and I don't
    know if that's too personal, but
  93. do you want to share like your
    motivation why you work
  94. for this organization?
  95. Yes, so I have worked in autism services
    and supports for 30 years. A little more
  96. than 30 years. Next for Autism is
    committed to developing quality
  97. programming and making sure that
    people with autism have a high
  98. quality of life. I am someone who's
    committed to social justice and I
  99. understand that the people with
    disabilities in or current society
  100. are not afforded the same opportunities
    and we're seeing that you know within
  101. the current healthcare crisis and I have
    seen that in my work and I want to work
  102. with an organization that wants to
    change that.
  103. So, if some of your members with
    autism, if they have some high risk
  104. factors, are you somehow concerned?
    Especially because you're in New York
  105. that you know those triage protocols
    will affect them negatively.
  106. Well one of the positive aspects that
    came out recently was you know we
  107. know that people have been alone in
    hospitals and that's a heartbreaking,
  108. we hear the stories from popular culture
    media, and it had been the protocol
  109. that individuals had to be alone due to
    the transmission factor. And most
  110. recently, it has been modified so that
    people with disabilities,
  111. people who need someone to be there
    with them as their advocate and they're
  112. able to assist with communication and
    decision making is now able to be there.
  113. I think that's a really important, you
    know things are changing fast and I
  114. think that health community saw that
    was not going to work.
  115. And that those individuals were not going
    to receive the best are and we know
  116. our outcare providers want the best for
    everyone, and so that was a modification.
  117. So I think that's an example of how we
    need to make sure that everybody
  118. gets what they need and for some people
    with autism and developmental disabilities
  119. that means that they need to have a
    health advocate with them.
  120. You know we've been in engaging in some
    communication around that.
  121. Here's the things you can think about,
    here's your patient bill of rights.
  122. Making sure because things are moving so
    quickly and our health system
  123. is so burdened. We just want to make sure
    that everyone's working together.