NESCA is currently accepting Therapy and Executive Function Coaching clients from middle school-age through adulthood with Therapist/Executive Function Coach/Parent Coach Carly Loureiro, MSW, LCSW. Carly specializes in the ASD population and also sees individuals who are highly anxious, depressed, or suffer with low self-esteem. She also offers parent coaching and family sessions when needed. For more information or to schedule appointments, please complete our Intake Form.

Tag

intellectual disability

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.

4

Meet Pediatric Neuropsychologist Lauren Halladay, Ph.D.

By | NESCA Notes 2022

By: Jane  Hauser

Director of Marketing & Outreach, NESCA

I recently had the opportunity to learn more about Pediatric Neuropsychologist Lauren Halladay, Ph.D., who joins NESCA in September. Learn more about her background and specialties in today’s blog interview.

How did you choose pediatric neuropsychology as a profession?

My interest was originally piqued when I was younger, as early as my high school years. I volunteered at a therapeutic riding program for kids with disabilities. That’s what initially sparked my desire to work with kids, and those with disabilities, in particular. My mother was a third grade teacher, which also imparted the desire to work with kids and help them overcome their challenges at school.

I went on to major in psychology and had a strong interest in pediatrics for the reasons I mentioned previously. Based on some of the work I did in graduate school, I learned that I really enjoyed the assessment piece, especially with the younger kids, helping them in life by identifying the right diagnosis (when applicable) and helping to put the right interventions in place for them to build skills that will equip them for the future.

How have your previous work experiences prepared you to be a neuropsychologist?

I’ve had a wide breadth of work experiences where I was supervised by neuropsychologists, whether it be in satellite health systems, the hospital setting, etc. While in those clinics, I had the opportunity to work with a variety of populations and presentations, including those who have experienced trauma, or have developmental or learning disabilities.

Having worked in several states throughout the country, including Oregon, Ohio, New York and Massachusetts, I’ve had the pleasure of working closely with a variety of families who present with unique backgrounds, experiences, and cultural values, which I always consider when making diagnostic decisions and developing recommendations.

What areas of neuropsychology have you most enjoyed to date? What would you consider your specialty area?

There are several areas that I am very passionate about. I really enjoy working with young kids, those under the ages of five or six. I also have a great interest in working with families who have concerns about their child potentially having an autism spectrum disorder or an intellectual or developmental disability. In addition, I find it incredibly rewarding to work with and help families whose children are medically complex or have moderate to severe cognitive impairments.

Regardless of how the child or student presents or what challenges they may have, I always individualize my approach so that I can meet the needs of each child. This is especially true in cases where families have had a hard time getting assessments done in the school setting or even privately in the past.

What is the most rewarding experience in neuropsychology that you’ve had to date?

I find it rewarding to hear from families when the strategies I’ve recommended are or are not working for them. For example, hearing that parents achieve success in implementing behavior management strategies, accessing support in the community, and/or learning about their child’s diagnosis and how to create an environment that suits their needs is a wonderful feeling. On the other hand, when the initial recommendations are not as helpful as intended, I enjoy approaching the problem-solving process together and discussing alternate approaches.

I also find it incredibly rewarding to offer parents and caregivers a deeper perspective on a child who has a moderate to severe cognitive impairment or is medically complex. Being able to give them a sense of where their child is developmentally in relation to their peers can be enlightening. Additionally, having more information about a child’s developmental level can help families and school staff establish appropriate, and individualized, expectations that set the child up for success. I strive to make a difference in these cases by developing strong partnerships with families, as well as serving as a trusted resource and advocate as they navigate how to best access supports in the community and in school.

What benefits, having been trained in a school psychology department, do you bring to families at NESCA?

My school psychology background allows me to bring a deep awareness and perspective on how the IEP process works. My experience and knowledge of special education rights allows me to be a true partner to families who are trying to navigate and understand the IEP process. I am able to share that knowledge and better advocate for my clients in Team meetings.

Why did you decide to join the team at NESCA?

I knew that in my next career move, I wanted to be part of a collaborative community that puts an emphasis on work/life balance—I feel that both allow clinicians to produce the highest quality work. At NESCA, I will also have the opportunity to use my school psychology skills and be an active participant in the IEP process on behalf of our clients.

NESCA is known for creating and building long-lasting relationships with the families they work with. I look forward to working with families and their schools/districts for the long-term, helping students to build skills along the way that will help them throughout their lives.

Finally, not being a native Bostonian, I am excited to learn more about and partner with the different school systems on behalf of the families and students we work with at NESCA.

 

About Lauren Halladay, Ph.D.

Dr. Halladay conducts comprehensive evaluations of toddlers, preschoolers, and school-aged children with a wide range of developmental, behavioral, and emotional concerns. She particularly enjoys working with individuals with Autism Spectrum Disorder, Intellectual and Developmental Disabilities, and complex medical conditions. She has experience working in schools, as well as outpatient and inpatient hospital settings. She is passionate about optimizing outcomes for children with neurodevelopmental disabilities by providing evidence-based, family-oriented care.

 

If you are interested in booking an appointment for 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.

39

Testing Outside the Box—Vocational Assessments for Nonverbal, Nonreading and/or Hard-to-Test Students

By | NESCA Notes 2022

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

My colleague Tabitha Monahan and I have dedicated several recent blog entries to vocational assessment—a vital tool for helping students to learn about career planning and employment and to set career goals for themselves. Previous blogs have included an overview of vocational assessment as well as an in depth look at career interest inventories, career aptitude testing, assessing work motivation and values and real-life experiences, such as informational interviews and job shadows.

However, many of the most “popular” or common tools for vocation assessment are intended for use with students who have functional reading abilities (i.e., basic reading skills at or above 5th grade levels). While there are many accommodations a skilled evaluator might use to help a wide range of students effectively access these tests, there are also students who receive special education services and cannot access these word-based and rating-based assessment tools. So, what tools can be used effectively with these students? How do we assess interests and aptitudes for students who are nonverbal, have reduced reading skills, or may provide unreliable responses to language-based testing methodologies? Below are a few of the methods that we find particularly useful at NESCA.

  • Picture-based Interest Inventories

Instead of using text-based items and rating scales, picture-based career interest inventories help individuals to express their occupational interests by selecting preferred pictures of people at work or people performing work-related tasks. Pictures are presented in sets of two, three, or more, and the student points to or circles the picture that seems most interesting. Based on the number and types of pictures selected, the test identifies work themes that are most appealing to the student. Evaluators can also look for themes among pictures selected, such as a student who selects a high number of pictures that have multiple people, computers, vehicles, outdoor activities, etc. Three popular picture-based assessments are the Picture Interest Career Survey (PICS) published by JIST, the Reading-Free Vocational Interest Inventory-Third Edition (RFVII-3) by Katherine Synatschk and Ralph Becker, and the Career Interest Inventory – Pictorial Version by Shasta Twenty-first Century Career Connections.

  • Video-based Interest Assessment

Video-based career interest assessments are more difficult to find but can be incredibly useful nonverbal tools for vocational evaluation and career planning. A tool that we use at NESCA is Your Employment Selections (YES), which is a CD-ROM-based reading-free job preference and career exploration program that has 120 videos of different jobs which are viewed and compared strategically in pairs. Through initial video-based trial, students indicate preferences, such as a desire to work indoors or outdoors, work alone or with coworkers, interact with the public or coworkers, and do light or heavy lifting work. These preferences are used to determine which subset of job videos the student will view. Traditional testing involves the student watching two videos and pointing to, or clicking on, the one they like more. However, the evaluator can work with a student who has limited verbal abilities to determine some of the features or tasks the student likes most, or dislikes most, within the specific job videos shown. While this video program is no longer available for retail, there are plenty of great career videos that can be used to carry out similar informal assessment on web sites, such as CareerOneStop, Dr. Kit, MassHire Career Information System, and even YouTube.

  • Functional Assessments and Observations

For all students, regardless of communication or self-determination skills, functional assessments and real-world observations play a vital role in career assessment and planning. For students who struggle with reading- and writing-based assessments, it can be important to have access to more hands-on standardized assessments of employment strengths and abilities. One such assessment tool is the Skills Assessment Module (SAM) published by Piney Mountain Press, which includes an auditory directions screen to determine how well a student can follow verbal directions and 12 work-related activities that simulate actual work aptitudes required in training and jobs (e.g., mail sort, ruler reading, assembling small parts, etc.). However, evaluators who do not have access to formal assessments can purchase or create pre-vocational and vocational kits for assessing and learning work skills and can carry out functional assessment of real or simulated work-related tasks in school, community, and work settings.

Observing students performing work-related behaviors and tasks is one of the most powerful evaluation tools that we have for determining strengths and needed areas for growth. If a student is performing vocational activities at school or has a volunteer or paid job during the week, that can be critical for an evaluator to observe. There are also protocols that can be used to formally assess students’ skills during observations, such as the Vocational Skills Assessment Protocol from The Assessment of Functional Living Skills (AFLS), and the Becker Work Adjustment Profile – Second Edition (BWAP-2).

  • Interviews and Parent/Educator Participation in Interest Inventories

While some transition-aged students may have trouble clearly expressing interests using words or inventories, all students have some way of communicating information to people who know them well. Transition and vocational assessments often require creativity and effort to gain informal, subjective, and anecdotal information from educators, parents, and other stakeholders who know the student well. It is useful to interview several people, asking questions about the student’s preferred leisure and school activities, areas of strength, preferences that need to be taken into account when planning for future employment, and specifically asking if there are any jobs that the interviewee is aware of that they think might be a good fit for the student in the future. Another technique is to use career interest inventories which are intended for self-report, such as the O*Net Interest Profiler (IP) or RIASEC, and ask parents or educators to fill out the inventory with what they believe the student’s preferences would be. Having a high level of correlation between parent report, educator report, and the student’s responses on picture-based or video-based testing can be extremely helpful in knowing where to focus career planning energy for the student.

Conducting vocational assessment, or any assessment, for this population of students—when tests are often not explicitly designed for them–is difficult. There are some tremendous tools specifically designed for testing students who are nonverbal or nonreaders, and there are many other assessment tools which can be made, modified, or used in nontraditional ways to gain a more complete picture of the student. The most important aspect of assessment is to choose the tools that are going to best suit the student.

For more information about vocational assessment and transition assessment at NESCA, visit our transition services page and our transition FAQs.

 

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. Ms. Challen also provides expert witness testimony in legal proceedings related to special education. 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, call 617-658-9800 or complete our online Intake Form.

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.

18

Making Decisions in Adulthood: Some Options

By | NESCA Notes 2020

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

As a transition specialist working with students from middle school through young adulthood, one of the biggest transitions that students make is “turning 18” or when they reach the Age of Majority (i.e., the legal age established by state law at which the person is no longer a minor) and gain the rights and responsibilities for making educational, medical, financial and other legal decisions. For students who have had a tremendous amount of support at home and in school, this transition can be challenging. Some students are not ready to make competent decisions for themselves, and other students may never be capable of making competent and informed decisions independently. If your child or a student you are working with needs help making decisions in adulthood, there are several options for organizing decision-making in adulthood. Because I am not a legal agent, I do always suggest that families consult with experts, such as special needs attorneys, financial planners and medical experts, as they work toward determining the best legal decision-making arrangement for their child.

Here are some basic descriptions of decision-making options you may consider for your child:

Power of Attorney (POA): A written authorization that allows a person to represent or act on another’s behalf. There are different types of POAs, and they can be written specific to whatever acts the individual wants the agent to be able to perform (e.g., private affairs, business, financial, medical or some other legal matter).

Health Care Proxy: A legal instrument with which the individual appoints a healthcare agent to make healthcare decisions on behalf of the individual when he or she is incapable of making and executing the healthcare decisions stipulated in the proxy. One way this is different from a POA is that the healthcare agent is only able to make medical decisions for the individual during the time when that individual is incapacitated. However, some healthcare professionals may view a healthcare proxy as a desire to share medical decision-making even though that is not exactly the letter of the law.

Guardianship/Conservatorship: A court-ordered arrangement whereby one or more persons are given legal authority to make decisions on behalf of another person. Guardianship and conservatorship are used when the person’s decision-making capacity is so impaired that the person is unable to care for his or her own personal safety or to provide for his or her necessities of life. Guardians and conservators may have limited decision-making power or general broad control. While POAs and health care proxies are arrangements that might be considered mainstream as they can be accessed by any adult with or without a disability, guardianship and conservatorship are more extreme options as a guardian is taking full or partial control over an individual’s affairs and taking away some of that person’s legal and civil rights.

Supported Decision-Making (SDM): SDM is an alternative to guardianship whereby the individual with a disability selects supporters who will assist the individual in making their own decisions. It allows an individual with a disability to make his or her own decisions about life choices with the support of a designated person or team of trusted supporters. This is an alternative to guardianship which is becoming more popular in Massachusetts and many other states across the country. To learn more about SDM, check out the National Resource Center for Supported Decision-Making and the Supported Decisions Site from the Center for Public Representation.

If you are looking for more information about special needs legal planning specific to Massachusetts, these are a handful of resources you may want to explore:

 

If you are interested in working with a transition specialist at NESCA for consultation, coaching, planning or evaluation, please complete our online intake form: https://nesca-newton.com/intake-form/.

 

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.

2

Having a Seat at the Table

By | NESCA Notes 2019

By Dot Lucci, M.Ed., CAGS

Many people come to NESCA because their child/children or they are struggling in some aspect of their life, school or work. They come to be evaluated, counseled or to access our integrative services. Often, they are hoping to gain insight into what is amiss and ultimately receive recommendations to help develop a “roadmap” toward improving their lives. The roadmap provides them with a greater understanding of themselves or their child/children, including strengths, challenges and possibilities. Through the neuropsychological evaluation, a diagnostic label is often provided, if warranted, that conceptualizes their learning and psychological profile. This label typically implies a difference from the “norm” – a disability. So, is getting a label of a disability a relief, a shock, a curse, a dream shattered or an “ah ha” moment? It may be all of these, and these feelings may change over time. Is a disability a “bad thing” or a “good thing” or both? I like to say, “It just is.” It is a piece of who we are, but it isn’t everything – nor does it define us in our totality.

Did you know that 60 million Americans have a disability? That’s 20% of our population. Many of us will enter this category of disability as we age; therefore, all of us will know someone with a disability or will develop one ourselves. As Jay Ruderman, disability advocate, says, “It’s the only minority group almost all of us are guaranteed to join at some point in our lives.” If we look at it this way, wouldn’t we all be better off if we embraced people with disabilities across all aspects and stages of life? Wouldn’t it be nice to know that there’s a place for us at the table and one that we didn’t have to fight for?

It’s been 30 years since the Americans with Disabilities Act (ADA), the civil rights law that prohibits the discrimination against individuals with disabilities in all areas of life (work, schools, housing, etc.), was passed. It states that people with disabilities should have the same rights and opportunities as everyone else, meaning they belong at the table and should be included. But do individuals with disabilities truly have the same rights as non-disabled people? On paper, yes, but in practice, not necessarily. While people with disabilities do have many more rights today than they did before the ADA was passed, barriers still exist – people are still marginalized and fighting for equality. The law says everyone is equal, yet people are still discriminated against in profound and subtle ways every day.

Compared to 30 years ago, public education, communities and businesses are doing a much better job at recognizing individuals with disabilities and providing opportunities for them. We now have universal design principles utilized in architecture, community planning, schools and businesses. However, there is still much to be done! Data from the National Center for Education Statistics shows that in 2017, 63% of students across all disability categories spend 80% or more of their school day in classrooms with typically developing peers. That’s a dramatic increase from pre-ADA years. Yet in contrast, only 17% of students with intellectual impairment and 14% with autism spend their time in general education classrooms.

When disabled students age out of the educational system, they are not faring as well as their nondisabled peers in opportunities for housing, community and employment inclusion. Data from the Department of Labor Statistic states that the employment to population ratios in 2018 are still lagging for persons with a disability. In fact, 20.8 % are employed, whereas 69.2% of “non-disabled” persons are employed. Why is that? This is an untapped workforce. What holds back employers, communities and housing authorities from hiring and including people with disabilities? Is it fear? Is it a belief that they can’t do the job, or that it will cost more to hire/include a person with a disability? The reasons/excuses cited are endless, and unfortunately inhibit us from including people with disabilities from being truly valued and contributing members of society.

So, even 30 years later, there is much work to be done to improve outcomes for individuals with disabilities. We have to look inside ourselves and ask, “What are we doing to create an inclusive society?”. How have we fostered an inclusive community at school, work, as we walk down the street or at a café? How have we overcome our own biases and fears, or helped to alleviate the fear of other people? How have we helped to change the hearts, minds and beliefs of others so we have true inclusion and true equality? Much like the civil rights movement did – it’s taking a stance and doing what’s right for everyone. Inclusion is about creating a better world, where everyone belongs, is valued and honored for who they are and what they contribute to our society.

Remember, in the word “disability” is “ability.” This should be the guiding principle. See the ability before you see the disability in people. Everyone has abilities, interests and strengths that can be used to better our world. Recognize the abilities and strengths of individuals who learn and work differently, for it is what makes the world a better place. We hope that after coming to NESCA for an evaluation, counseling or integrative services, our clients leave with a better understanding of themselves or their child/children, recommendations for next steps, an acceptance of who they are and hope for the future.

For additional resources, please visit:

Commit to Inclusion www.committoinclusion.org

National Center for Educational Statistics www.nces.ed.gov

Disabled World www.disabled-world.com

 

About the Author:

NESCA’s Director of Consultation and Psychoeducational Services Dot Lucci has been active in the fields of education, psychology, research and academia for over 30 years. She is a national consultant and speaker on program design and the inclusion of children and adolescents with special needs, especially those diagnosed with Autism Spectrum Disorder (ASD). Prior to joining NESCA, Ms. Lucci was the Principal of the Partners Program/EDCO Collaborative and previously the Program Director and Director of Consultation at MGH/Aspire for 13 years, where she built child, teen and young adult programs and established the 3-Ss (self-awareness, social competency and stress management) as the programming backbone. She also served as director of the Autism Support Center. Ms. Lucci was previously an elementary classroom teacher, special educator, researcher, school psychologist, college professor and director of public schools, a private special education school and an education collaborative.

Ms. Lucci directs NESCA’s consultation services to public and private schools, colleges and universities, businesses and community agencies. She also provides psychoeducational counseling directly to students and parents. Ms. Lucci’s clinical interests include mind-body practices, positive psychology, and the use of technology and biofeedback devices in the instruction of social and emotional learning, especially as they apply to neurodiverse individuals.

 

To book a consultation with Ms. Lucci or one of our many expert neuropsychologists, complete NESCA’s online intake form. Indicate whether you are seeking an “evaluation” or “consultation” and your preferred clinician/consultant in the referral line.

 

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.