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Family Voices on Transition Experiences in NYS
& Implications for Policy and Practice

OUR GOALS
  • Give voice to the experiences of families

  • Inform NYS Transition Partners activities & products

  • Share family experiences with those who can help improve the transition experience

  • Provide recommendations to help young people be ready for college, career, and independent living.

THE PROCESS
  • A 20-item survey for parents of young people ages 12 – 26 was distributed in April 2016 issue of ACCESS, the project’s monthly transition newsletter with an email distribution list of 44,500.

  • We heard back from 464 NYS parents who met these criteria, and 212 of these respondents left comments, many lengthy and substantive.

  • The majority of respondents (55%) represent children over age 18, while 32% have children ages 15 to 17, and 13% 12 to 14.

  • Our respondents have a high proportion of children with more significant disabilities: 46% of people indicated that their children receive services from OPWDD.

  • We also interviewed transition practitioners “on background” to contextualize responses.

WHAT PARENTS SAID: MAJOR THEMES
  • Inconsistent implementation of IDEA transition requirements across districts, schools & regions

  • Perceived lack of time/capacity to earn both Regents Diploma and CDOS credential

  • Students not ready for college academically, socially, or emotionally

  • Parents feel unsupported and unable to navigate next steps

  • Lack of jobs and career path opportunities

  • Lack of post-school support for independent living, work, and social connection

Inconsistent implementation of IDEA transition requirements:

There is tremendous variability across districts and schools in the implementation of transition requirements during the middle and high school years.

 

The impact of this inconsistency is that families frequently feel their students are unprepared for the challenges of postsecondary education, employment, or independent living.

Level 1 Assessments and the Middle School Years:
  • Fewer than half (48%) of survey respondents who have children over age 14 reported that a Level 1 Transition Assessment was completed.

  • Of this group, 64% reported that the assessment was used to develop IEP goals.

  • Only 30% of these reported that the assessment was useful for planning for high school.

Individual Education Program Process
  • Only 56% of parents of young people age 14 and above reported that their child was involved in his/her IEP meeting.

  • Further, we have little data about the nature and quality of this participation.

Transition Goals
  • 57% of parents who have children ages 15 and up reported that their child’s IEP did not include a transition plan

  • Of parents of children age 15 and above, nearly half of parents (46%) reported have no plan for what their will do after completing high school and 55% of reported not feeling prepared for life after high school.

  • 54% of parents reported the school did not actively work toward transition goals with their child, including where they will live, work, and learn.

CDOS and Regents Diploma
  • For many students, earning a Regents Diploma and a CDOS credential feels difficult.

  • Both parents and professionals expressed concerns that for many of these students there is not enough time in the school day to attend to both transition priorities and academic ones

  • Students with invisible disabilities often can meet academic criteria with a lot of work and support, but also need the work-focused social and employability skills supported by strong transition IEPS.

  • Students often graduate without the social skills, self-advocacy, and practical skills (money management, time management) to successfully navigate work situations or college.

  • And after the herculean effort many of these students make to get a diploma, they do not have access to career-path jobs.

Students are not ready for college
  • Parents perceive a lack of preparation, collaboration, and coordination—creating a barrier for students with disabilities to start college ready to succeed.

  • Only 16% of parents of students age 18 and above in the survey indicated that their young adult is currently enrolled in college.

  • Of those parents reporting on students who were no longer in school, 58% received exit summaries and 44% received course of study statements

Parents feel unsupported and unable to navigate next steps
  • Although education professionals note improvements in interagency planning, collaboration, and coordination, young people are still falling through the cracks; and many parents report that they feel unsupported and unable to navigate next steps, and that their children are unprepared for work or school

  • According to the parent survey, 74% of students ages 15 and up were not connected with ACCES-VR services, 50% were not connected with OPWDD, and 83% were not connected to the Office of Mental Health.

  • Of the 66 parents who have children connected with ACCES-VR services, all reported that the school helped to connect them with these services.

Lack of employment & career path opportunities
  • There is great concern about shortage of opportunities for young adults with disabilities to support themselves AND/ or have a career path.

  • 47% of parents of children 18 and older reported that their children have a paid position; 49%, had a volunteer position, and 21% were involved in an internship.

  • Yet many of these young adults who have jobs are underemployed with few hours, no benefits, and no career path.

Lack of post-school support for independent living, work, and social connection
  • Of the parents who responded to the survey, 46% indicated that they receive some services through OPWDD. The OPWDD system is especially complex for families to access, with strict eligibility criteria, documentation requirements, a frequently changing “Front Door” process, Medicaid regulations, and service coordinators who may change jobs and agencies.

  • While professionals report that collaboration between schools and ACCES-VR is improving, parents are concerned that school-based transition personnel have little knowledge about the OPWDD process, exacerbating the difficulties parents have both understanding and accessing services. Parents express considerable anger, frustration, and confusion. • For parents who report that their children are “too high functioning” to qualify for OPWDD, there is frustration with the lack of support for work, social connection, and independent living.

  • Parents report that family support & involvement is a key determinant of post-school opportunities & outcomes

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