Tag

intellectual disability

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.

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.