Parents of children with special needs often find themselves at a loss when the child turns 18 and graduates from high school. How do they ensure that their child isn’t cut off from services they rely on?
Ann Verploegen, school psychologist with Big Sky Special Needs Cooperative, gave a presentation at the Oct. 20 Teton County Community Alliance for Resiliency and Educational Support (CARES) meeting addressing how to make that transition to adulthood smoothly.
“Services don’t automatically continue after high school, and once the person is 18, they’re no longer eligible for some services. You get cut off,” Verploegen said.
According to Verploegen, there are three things families must consider (preferably before the child turns 18) in order to ensure they can still receive services as an adult: getting an official evaluation/diagnosis, transferring rights, and setting up finances and social security benefits. She shared three different brochures with the group, each on one of those topics.
Professionals from Big Sky Special Needs Cooperative will evaluate children for various special needs (e.g., physical and/or mental disabilities, developmental disorders, visual or hearing impairment or social/emotional disorders) and work with the schools and parents to develop individualized education plans for those students who are determined to need special education services. However, BSSNC professionals only work within the school system; individuals needing services outside of school will need to get an evaluation and/or diagnosis from a hospital provider or private practitioner to be eligible for services outside of school.
“What’s different now as opposed to 10 or 20 years ago is the comorbidity levels are much higher today,” Verploegen said. “Very rarely do you have a student with just autism or just ADHD. They often will have multiple needs, and it makes things more complex.”
The advancement of genetics also plays a role in making evaluations more complex, Verploegen explained. A decade ago, children with rare genetic disorders would often go without a specific diagnosis, and be placed in an umbrella category. Now, genetic diagnoses are very specific, and can point to exactly which chromosome or gene sequence is altered, and exactly how rare or common the condition is.
Transfer of Rights
A person gains a lot of responsibility when they turn 18: they can vote, get married, open a bank account, get a credit card, decide what privacy information to withhold from parents, sign contracts and make their own financial and medical decisions. In Montana, a student can drop out of school at age 16. The choices a student makes when he or she is a teenager can have a significant impact on his or her quality of life in the years after school.
If a child’s disability prevents them from making informed decisions as an adult, there are a variety of legal avenues parents can take to help them: guardianship, conservatorship or power of attorney.
Guardians may be in charge of some or all of the ward’s personal affairs, including medical, financial and legal concerns. A conservator, by contrast, only deals with financial decisions (e.g. giving a spending allowance or managing investments and an estate). Power of Attorney is generally more restrictive, as it allows a person to act for a disabled/incapacitated person rather than with them. Power of attorney can be for medical, financial, or educational decisions, or all three.
Note that individuals who are deemed legally “incapacitated” are not “incompetent,” and therefore maintain all rights except those that are explicitly limited by a guardianship or power of attorney. Montana code states that guardianships “may be used only as is necessary to promote and protect the well-being of the person” and “must be designed to encourage the development of maximum self-reliance and independence in the person and may be ordered only to the extent that the person's actual mental and physical limitations require it.”
Big Sky Special Needs Cooperative and the University of Montana Rural Institute both have materials to help families design legal supports that are allow the special needs individual as much independence as possible and still give them a support structure that is flexible to his or her changing needs.
To decide what approach is best, families should consider the individual’s skills and strengths, and identify ones that need development. Parents should also encourage children to start making “supported decisions” at a young age and practice planning for things in the future (even if it’s just planning what to prepare for dinner, or what errands to run next week). The more a person exercises decision-making skills, the better those skills will develop and the more confident the child will be in their own independence.
Financial and Social Security
Youth with disabilities who are eligible for Supplemental Security Income (SSI) must have their eligibility “redetermined” when they turn 18, using the slightly different disability definition for adults. The majority of redeterminations result in continuances of benefits, but it is still an important step to take, to ensure your child doesn’t miss out on any needed payments.
Just because a person is disabled, however, does not necessarily make them ineligible for work. Teenagers with disabilities are encouraged to meet with potential employers and see where they may be a good fit; if they have any trouble finding employment, there are also employment counselors that can work with the student to reach their career goals.
“A few years ago, I went to hear Temple Grandin give a talk in Havre. I thought her talk would mostly be about students and education, when in fact her biggest point was getting youth out in the community,” Verploegen said. “Becoming involved in the community is so important.”
Choteau resident Heather McCartney-Duty said she greatly appreciated the sort of resources that Verploegen described. “I can attest that it worked well for us. We had a child who was able to have everything evaluated before he was 18, and that allowed him to get the services he needed to go to college.”
In other discussion, CARES members gave various updates, including:
•EMS Director Deb Coverdell said that emergency medical response crews have seen a steady rise in mental health cases in the last months. They are hoping to hold more mental health first aid classes, both for responders and for the public, in the future.
•Chris Borst gave an update on her new practice, Front Range Family Psychiatry in Choteau, which she opened in June. Borst said she has seen a “resurgence” of clients coming to her who have never sought psychiatric help before, but realize they need it now as the coping skills they had no longer help. “Many of them are overwhelmed with the national information coming from media and aren’t sure what to do with it. Local information has been very clear and helpful, and I appreciate that,” Borst said. “I knew there was a need, but I never realized how much of a need there was. I’m glad I picked Choteau. It’s very progressive here, and people aren’t ashamed of the words ‘mental health.’”
•Julie Prigmore, a licensed clinical professional counselor with the Center for Mental Health, said she has seen an increase in mental health walk-ins, and the CMH is expected to offer a more intensive service for people in this area. The service would be for those who have significant mental disability and would like help getting stabilized in housing, employment and relationships. More information about this service will be available later.