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Tag

adult services

47

If My Child Attends a Residential School, Will the State Pay for Housing When They Graduate?

By | NESCA Notes 2024

By: Kelley Challen, Ed.M., CAS
Director of Transition Services, NESCA

The goal of transition services is to help students who are on IEPs to progress toward their measurable postsecondary goals. This includes planning for future learning and work situations, and also planning for future living—as independently as possible. An enormous challenge that comes up in this planning process is that families (and sometimes the professionals supporting them) do not fully understand the realities of housing for adults who have exited public education.

There is a common misconception that if your child has qualified for residential special education programming, that will mean that your child will qualify for residential support as an adult. However, adult human service supports are not an entitlement like special education—these services are voted on by state legislature. The truth is that adult services and benefits are built to fill in the gaps of what you cannot physically or financially do to support your child. If you are alive and you can reasonably take care of your child, even with support, that is what you will be expected to do. If, instead, you want your child to be able to live in their own home or a shared home, then you and your child will be responsible for figuring out how to find and fund that living situation.

Hopefully, this data, shared by Cathy Boyle of Autism Housing Pathways in a January presentation, titled “Thinking About Housing,” will help to hammer home this point. Cathy shared numbers from fiscal year 2021 which quantified some of the residential supports awarded to young adults in Massachusetts who turned 22 during that fiscal year. Specifically, there were 1,233 students turning 22 who were served by the Department of Developmental Services (DDS) in Massachusetts. Of that number, only 263 received “residential supports.” However, the majority of those “residential supports” were provided in shared living situations where the housing was not being funded by DDS. It was only about 100 individuals statewide who turned 22 and entered into brick-and-mortar homes funded by DDS.

Regarding who is able to secure DDS housing in Massachusetts, it is typically only available to individuals who have an intellectual disability that was diagnosed before age 18 and (1) are a danger to themselves, and/or (2) are a danger to others, and/or (3) have pica (a condition in which a person eats items not usually considered food). There are some other criteria considered, including whether the caregiver can keep the individual healthy and safe (based on caregiver criteria, such as age, health, employment) and the judgment of the evaluator from the state. But, as previously described, housing is reserved for individuals with the most significant needs. Also, while there is funding through DDS for day services for adults with autism in Massachusetts, this budget explicitly does not cover residential services or housing. Only individuals with autism who also meet the intellectual disability criteria are eligible for housing under standard criteria.

If your child has a mental health condition, you may wonder about housing through Department of Mental Health (DMH). While it’s difficult to find current statistics on the number of young adults turning 22 and receiving group home services, there is a limited number of beds, and eligibility criteria for DMH services specifies that you can only be eligible for services if they are actually available. Also, the criterion for housing is quite similar to DDS in that an individual has to be entirely unable to live at home even with intensive in-home support. This often equates to the same variable of whether your child is actively at risk of harming themselves or another person.

While I’m providing data from Massachusetts in order to exemplify these housing challenges, the struggles are similar, if not more difficult, across the United States. The reality is that if you have a child with a disability, you and your child are more than likely going to have to plan for and figure out how to pay for their housing in adulthood. This is one of the ways that our children are treated 100% similarly to nondisabled adults. Although having a disability may help your child to qualify for accommodations in adulthood, living accommodations are most often not part of that right.

Resources:

NESCA offers many services designed to help students bridge the transition from high school to college including executive function coaching, pre-college coaching, transition planning, and neuropsychological evaluation. To learn more specifically about our transition planning services, visit https://nesca-newton.com/transition/. To learn about other coaching services, visit: https://nesca-newton.com/coaching-services/. To schedule an appointment with one of our expert clinicians or coaches, please complete our intake at: https://nesca-newton.com/intake/.

 

About the Author
Kelley Challen, Ed.M., CAS, is an expert transition specialist and national speaker who has been engaged in evaluation, development, and direction of transition-focused programming for teenagers and young adults with a wide array of developmental and learning abilities since 2004. While Ms. Challen has special expertise in working with youth with autism, she enjoys working with students with a range of cognitive, learning, communication, social, emotional and/or behavioral needs.

Ms. Challen joined NESCA as Director of Transition Services in 2013. She believes that the transition to postsecondary adulthood activities such as learning, living, and working is an ongoing process–and that there is no age too early or too late to begin planning. Moreover, any transition plan should be person-centered, individualized and include steps beyond the completion of secondary school.

Through her role at NESCA, Ms. Challen provides a wide array of services including individualized transition assessment, planning, consultation, training, and program development services, as well as pre-college coaching. She is particularly skilled in providing transition assessment and consultation aimed at determining optimal timing for a student’s transition to college, technical training, adult learning, and/or employment as well as identifying and developing appropriate programs and services necessary for minimizing critical skill gaps.

Ms. Challen is one of the only professionals in New England who specializes in assisting families in selecting or developing programming as a steppingstone between special education and college participation and has a unique understanding of local postgraduate, pre-college, college support, college transition, postsecondary transition, and 18-22 programs. She is additionally familiar with a great number of approved high school and postsecondary special education placements for students from Massachusetts including public, collaborative, and private programs.

Ms. Challen enjoys the creative and collaborative problem-solving process necessary for successfully transitioning students with complex profiles toward independent adulthood. As such, she is regularly engaged in IEP Team Meetings, program consultations, and case management or student coaching as part of individualized post-12th grade programming. Moreover, she continually works to enhance and expand NESCA’s service offerings in order to meet the growing needs of the families, schools and communities we serve.

When appropriate, Ms. Challen has additionally provided expert witness testimony for families and school districts engaged in due process hearings or engaged in legal proceedings centering on transition assessment, services and/or programming—locally and nationally.

Nearly two decades ago, Ms. Challen began her work with youth with special needs working as a counselor for children and adolescents at Camp Good Times, a former program of Milestones Day School. She then spent several years at the Aspire Program (a Mass General for Children program; formerly YouthCare) where she founded an array of social, life and career skill development programs for teens and young adults with Asperger’s Syndrome and related profiles. Also, she worked at the Northeast Arc as Program Director for the Spotlight Program, a drama-based social pragmatics program, serving youth with a wide range of diagnoses and collaborating with several school districts to design in-house social skill and transition programs.

Ms. Challen received her Master’s Degree and Certificate of Advanced Graduate Study in Risk and Prevention Counseling from the Harvard University Graduate School of Education. While training and obtaining certification as a school guidance counselor, she completed her practicum work at Boston Latin School focusing on competitive college counseling.

Ms. Challen has worked on multiple committees involved in the Massachusetts DESE IEP Improvement Project, served as a Mentor for the Transition Leadership Program at UMass Boston, participated as a member of B-SET Boston Workforce Development Task Force, been an ongoing member of the Program Committee for the Association for Autism and Neurodiversity (AANE), and is a member of the New Hampshire Transition State Community of Practice (COP).

She is also co-author of the chapter, “Technologies to Support Interventions for Social-Emotional Intelligence, Self-Awareness, Personality Style, and Self-Regulation,” for the book Technology Tools for Students with Autism: Innovations that Enhance Independence and Learning.

To schedule an appointment with one of NESCA’s transition specialists, please complete our online intake form. 

NESCA is a pediatric neuropsychology practice and integrative treatment center with offices in Newton, Plainville, and Hingham, Massachusetts; Londonderry, New Hampshire; the greater Burlington, Vermont region; and Brooklyn, NY (coaching services only) serving clients from infancy through young adulthood and their families. For more information, please email info@nesca-newton.com or call 617-658-9800.

3

My child is nonverbal. Should I still get a neuropsychological evaluation?

By | NESCA Notes 2022

By: Erin Gibbons, Ph.D.
Pediatric Neuropsychologist, NESCA

The short answer to this question is YES. As a neuropsychologist, I enjoy evaluating students who have complex profiles, including intellectual/developmental disabilities, genetic conditions, and medical complexities. In many cases, these students have been deemed “untestable” and have never had a comprehensive evaluation.

This is problematic for two major reasons.

  • First, we cannot understand a student’s potential if we have no data or assessments available. Following from this, it is very hard to develop realistic and measurable goals without using the student’s innate potential to guide those goals.
  • Second, lack of testing causes practical and logistical problems later in the student’s life. As a child approaches adulthood at 18, it is necessary to have documentation of their cognitive and adaptive skills as well as diagnoses in order to seek adult services. More specifically, the Department of Developmental Services (DDS) requires documentation of intellectual disabilities prior to age 18.

Having assessed thousands of children and adolescents over the years, I’ve learned that I can ALWAYS gather important information from a neuropsychological evaluation. I have evaluated students who are nonverbal, students with severe intellectual disabilities, students with limited to no motor abilities, students with vision and hearing impairments, students with severely challenging behaviors…. In every case, a neuropsychological evaluation has been meaningful and useful in terms of A) understanding the student’s capabilities, and B) developing educational and treatment goals.

It is important to understand that a neuropsychological evaluation with a more developmentally complex student will look different than an evaluation with a neurotypical student. There are standardized tests that I will not be able to administer based on the student’s language skills, motor abilities, and academic knowledge. Some students can only tolerate 20 or 30 minutes of testing at a time, so the evaluation is broken into 9 or 10 sessions. Some students provide their responses using a communication device. Some students need to be supported by a behavior therapist to help them maintain a safe body.

In some cases, students cannot engage in any standardized tests due to multiple disabilities. However, I still have them come into my office at least once so that I can meet them in person and gather information about their communication skills, social interest, and activity levels. I will then spend time observing the student at their educational program, interviewing school-based staff, and gathering information from the student’s caregivers about their skills at home. With all of these data points, I can then provide a thorough set of recommendations for school-, community-, and home-based goals – even though I might not have “valid” standard scores.

For all of the families who think that a neuropsychological evaluation cannot be done with their child for one reason or another, I urge you to reconsider your perception of the purpose of an evaluation. In these cases, the emphasis of the evaluation is not on test scores, but on developing a better understanding of the student’s strengths and weaknesses. More importantly, the evaluation should be used as a reference to guide treatment goals to help the student achieve the highest level of independence of which they are capable based on their potential.

 

About the Author

Erin Gibbons, Ph.D. is a pediatric neuropsychologist with expertise in neurodevelopmental and neuropsychological assessment of infants,

children, and adolescents presenting with developmental disabilities including autism spectrum disorders, Down syndrome, intellectual disabilities, learning disabilities, and attention deficit disorders. She has a particular interest in assessing students with complex medical histories and/or neurological impairments, including those who are cognitively delayed, nonverbal, or physically disabled. Dr. Gibbons joined NESCA in 2011 after completing a two-year post-doctoral fellowship in the Developmental Medicine Center at Boston Children’s Hospital. She particularly enjoys working with young children, especially those who are transitioning from Early Intervention into preschool. Having been trained in administration of the Autism Diagnostic Observation Schedule (ADOS), Dr. Gibbons has experience diagnosing autism spectrum disorders in children aged 12 months and above.

 

If you are interested in booking an appointment for the ASD Diagnostic Clinic or an evaluation with a NESCA neuropsychologist/clinician, please fill out and submit our online intake form. 

 

Neuropsychology & Education Services for Children & Adolescents (NESCA) is a pediatric neuropsychology practice and integrative treatment center with offices in Newton and Plainville, Massachusetts, and Londonderry, New Hampshire, serving clients from preschool through young adulthood and their families. For more information, please email info@nesca-newton.com or call 617-658-9800.

20

Changes in Transitioning from School-based Services to DDS Adult Services during COVID-19

By | NESCA Notes 2021

By: Kelley Challen, Ed.M., CAS
Director of Transition Services; Assistant Director, NESCA

Transitioning from public education to adult human service supports is a complicated process that we have covered in several blogs over the years here at NESCA, including the two recent resources linked below:

As with many aspects of life, the existence of a global pandemic has complicated the transition process even more. In Massachusetts, Chapter 688 referrals (the referrals that help adult agencies to request the appropriate amount of funding from the state for supporting students with disabilities after they turn 22) were down by as much as 75% in September 2020. Additionally, referral processes that often were carried out in 2-4 months are taking much longer. In fact, at a team meeting I attended last week, a special education administrator shared that it had taken approximately 9 months to complete a recent referral to the Department of Developmental Services (DDS) for a student seeking adult autism services.

[For those unfamiliar with DDS, this is the agency that offers services and supports for individuals with intellectual and developmental disabilities including Autism Spectrum Disorder (ASD).]

To better support transitioning families, DDS recently developed an information sheet that highlights some of the potential changes and challenges families may experience when preparing for their transition to DDS adult service supports during COVID-19. In addition to modified referral timelines, the information sheet touches on changes in how families learn about day and residential programs (e.g., virtual tours) and the ways in which programs may have changed their approaches to service delivery as a result of COVID-19 (e.g., changes to community employment, remote and in-person offerings, visitor policies, etc.).

This DDS information sheet is helpful for professionals and families and is available in several languages on the state’s web site: https://www.mass.gov/lists/transition-considerations-during-covid-19.

 

For families who are struggling to navigate the transition from high school to adult service support, to understand available resources and benefits during or after public education, to create an effective plan for their child during a lapse in service delivery, or with any other transition planning issues, NESCA transition consultation and planning services are here to support you. Visit our transition services page and our transition FAQs or fill out an Intake Form to schedule an appointment with one of our expert transition specialists today.

 

About the Author:

Kelley Challen, Ed.M., CAS, is NESCA’s Director of Transition Services, overseeing planning, consultation, evaluation, coaching, case management, training and program development services. She is also the Assistant Director of NESCA, working under Dr. Ann Helmus to support day-to-day operations of the practice. Ms. Challen began facilitating programs for children and adolescents with special needs in 2004. After receiving her Master’s Degree and Certificate of Advanced Study in Risk and Prevention Counseling from Harvard Graduate School of Education, Ms. Challen spent several years at the MGH Aspire Program where she founded an array of social, life and career skill development programs for teens and young adults with Asperger’s Syndrome and related profiles. She additionally worked at the Northeast Arc as Program Director for the Spotlight Program, a drama-based social pragmatics program, serving youth with a wide range of diagnoses and collaborating with several school districts to design in-house social skills and transition programs. Ms. Challen is co-author of the chapter “Technologies to Support Interventions for Social- Emotional Intelligence, Self-Awareness, Personality Style, and Self-Regulation” for the book Technology Tools for Students with Autism. She is also a proud mother of two energetic boys, ages six and three. While Ms. Challen has special expertise in supporting students with Autism Spectrum Disorders, she provides support to individuals with a wide range of developmental and learning abilities, including students with complex medical needs.

Neuropsychology & Education Services for Children & Adolescents (NESCA) is a pediatric neuropsychology practice and integrative treatment center with offices in Newton, Massachusetts, Plainville, Massachusetts, and Londonderry, New Hampshire, serving clients from preschool through young adulthood and their families. For more information, please email info@nesca-newton.com or call 617-658-9800.

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