Reflections of a "Helper"

 

David Boulding, JD,consultant

 

 

As the content editor for this website, I am sorry to report that I lost all of the written material that I prepared for this page.  Part of the process and experience of being a grassroots organization apparently!   While I am rewriting, I will periodically post articles related to the justice system

Kathy Hotelling 

 

 

Join this FB page and see that options are expanding for all individuals with disabilities . You must join to view.   HOPE  

Increasing Independence in Living

Time sensitive!  April 16, 2019   Webinar

Transitioning to adulthood is a challenging task for those with an FASD and their families.  Assessing the services to assist in this process is time consuming and persistence is needed.  Nonetheless, it is a crucial task in preparing her/him for a successful future.

The groundwork for this transition lies in the active teaching of life skills. This must start earlier than when the individual is on the brink of adulthood, but, given the ups and downs of life of someone with an FASD and the complexity of any co-morbid mental illness, this is often easier said than done. There are life skills that don't come naturally that must be reinforced throughout time into the twenties.  These skills include how to: clean living spaces, wash dishes, shop for food, take public transportation, comparison shop, look for job, etc. While much of this learning may need to occur in the home, there are local agencies and school programs that teach some of these skills., notably in the Occupational Course of Study (OCS).  Network in your community to find additional avenues. 

The Individuals with Disabilities Act (IDEA) contains transition services requirements for students with disabilities, which must be addressed in the first Individualized Education Program (IEP) to be in effect when the student turns 16, or younger, if determined appropriate by the IEP Team.  The IEP will have suggestions as to possible next steps, but, of course, it is up to the family to explore these and other opportunities and to bring these ideas to fruition. Internships, mentorships, volunteer work, and part time jobs can assist your loved one in finding a "passion" which will lead to self confidence, skill building, and potentially a job.  For example, many children with an FASD love animals; the animals demand little and respond generously.  Encourage your child to go to the library and check out books, at an appropriate developmental level, about careers with animals.  While traditionally we may automatically think "vet," we know that this most likely is not an option.  There is a long list of jobs involving animals: dog walking, feeding of cats while neighbors are on vacation, staff in boarding facilities, dog groomers, farm help, zoo staff, to name a few.

Often Vocational Rehabilitation will be a first step that is recommended by school staff.  According to the website, Voc Rehab, the Division of Vocational Rehabilitation Services provides counseling, training, education, transportation, job placement, assistive technology and other support services to people with disabilities. There are over 30 VR offices in North Carolina; visit the website to see what office serves your area. 

If appropriate, VR may refer the individual to a vocational training program such as WORKSOURCE East (Goldsboro) which offers 24 hour supported living services located nearby.  The programs vary in length of training and include: environmental services; welding; automotive services; childcare; food services; carpentry & light construction; personal care aide; brick masonry; grounds maintenance; and printing.  WORKSOURCE West is in Morganton.

Other resources exist for training; please note that this list is not exhaustive.  Contact us with information about other programs so that those can be listed.

Caramore's vocational program (Carrboro)provides participants with immediate and paid employment while focusing on personal and professional development; two vocational areas are available:  landscaping and cleaning. 

In 1964, Sargent Shriver started the Job Corps. Job Corps is a "federally funded comprehensive program that provides essential academic and career skills training and prepares students for success in every aspect of their lives."  Income eligible students pay nothing for this program. Room and board is included.  There are four locations in NC.

Josh's Hope "bridges gaps for young adults with mental illness."  Services are multifaceted and include vocational skills, job preparedness, independent life skills and therapeutic supports customized to meet the individual needs of participants. They also work with parents by training them to help their children transition to adult services and navigate multiple systems.  Currently (2018), two vocational skill programs exist.  The first is Tools for Hope, which is a comprehensive personal skills and vocational training program with an emphasis on teaching carpentry and job preparedness skills while also providing therapeutic supports, supervision, and instruction in Independent Life Skills (ILS).   The second is Recipe for Hope, a culinary program in conjunction with Midway Community Kitchen.  This program includes learning cooking and food industry terminology, proper use of commercial kitchen equipment, reading, interpreting and modifying recipes, basic food preparation, kitchen health and safety, as well as hospitality service.

The Farm at Penny Lane (Chapel Hill) uses a holistic and sustainable approach to enhance the quality of life of individuals with severe and persistent mental illness by offering opportunities to become healthier and more self-sufficient. Programs include horticultural therapy, farm work days, and Wellness, Education, Leadership, and Lifestyle (WELL). 

Started in October 2018, HOPE NC consists of families who are committed to finding housing options for their adult children with developmental disabilities in the Triangle area of North Carolina. HOPE (Housing Options for People with Exceptionalities)

To find other opportunities for transitioning to adulthood, network with others in your community; in addition, NAMI has been helpful to many families for support and information.

 

 

If you are considering a community college or four year institution for your loved one with an FASD, take into account developmental age in determining when this step may be a good fit for her or him and when.  Even a community college certificate program may be a big step from high school in terms of independence expected, size of classes, etc.  When those who are neurotypical attend college, they tend to be in the 16-18 developmental age range.  As you have read in literature about those with an FASD, the developmental age can be up to one half of the chronological age.  Would you send a 12 year old to college, even as a commuter living at home?

The "gaps years," the year or more between high school and college, can be utilized to develop independence, continue taking high school courses; students with a disability can stay in high school as long as they are 21 years of age on the first day of the academic year.  Some individuals may balk at this idea because of the expectation that everyone is out of high school at 18, but even part time attendance and taking electives can be growth producing and gives the person a chance to shorten the difference in developmental age and chronological age.  Other choices include certificate programs such as those mentioned in the Transitioning to Adulthood tab of this website.  Most community colleges have certificate programs and the pace of movement through those programs, as with most colleges, can be determined by the need of the individual.

It should be noted that all college campuses are mandated to have a disabilty office.  Unfortunately, as with many mandates, the extent to which the mandate is achieved may vary appropriate advocacy imay be needed.  With a physician's statement of disability, accommodations can be requested. Your contact with the disability office will be affected by how your rights as a parent change when your child is 18 or older, unless you have guardianship (see Legal Representation tab) or your son or daughter signs a waiver entitling you to have access to some college records. FERPA is the Family Educational Rights and Privacy Act, a federal law enacted in 1974; it protects the privacy of student education records. All educational institutions that receive federal funding must comply with FERPA.  If your child allows you to go the disability office with him/her and participate in the conversation, you will have a greater impact on the accommdations than if you do not attend.  Also, accompanying your student to meetings at the college, including with an academic advisor, allows you to serve as a "cognitive translator" or "external brain."  You can help her/him understand the procedures, regulations, etc. provided by the college official.  If you are not present, you will not know whether your student is portraying what is communicated in an accurate manner; this, of course, is due to brain damage:  processing and less than ideal executive functions.  If your child does not allow you to go to the meetings with them, most colleges offer an orientation for parents where you can gain information about policies and procedures, etc.  

Think College is an organization which encourages the development, expansion, and improvement of inclusive programs for those with IDDs at the collegiate level.  Over 250 campuses are included in their data base. These programs do not result in a bachelors degree, but provide a college experience for your son/daughter with classes that help them develop lifeskills and employment opportunities. 

It is important to remember that FASD is  indeed a spectrum disorder and while one individual may be able be successful in one of the above options, the fit for others may not be appropriate.  Discussing this with teachers and others that know your son or daughter well may guide you in how you talk to him or her about these life decisions.

Supplemental Security Income (SSI) is a Federal program funded by general tax revenues and is designed for those with disabilities acquired before the age of 22 and with little or no income for rent, food, and clothing. Applications can be done online, by making an appointment via phone, or without an appointment by going to the local Social Security office (anticipate wait)  Online Application  Any diagnosis under the FASD umbrella qualifies as a disability for this purpose.  

When to apply:  Since family and applicant's incomes are considered when applying for SSI, many families will apply about six months before the applicant's 18th birthday.  It is important to note, however, that some total incomes do not hinder application.  Also, it is notable that birth weight under 2 pounds 10 ounces, severe intellectual disability at 4 or older, and failure to thrive from birth to 3 years of age may be qualifying conditions. Click for detailed information. 

"Veterans" of this application process suggest that you scan (to a flash drive) ALL available medical records, including: 

  • birth records
  • pediatrician/family practice records
  • interpretative data from procedures such as MRIs
  • allied health (Occupational Therapy, Physical Therapy, Speech Language Therapy
  • early intervention service notes
  • mental health records
  • psychiatrist records
  • hospitalization records
  • psychological and neuropsychological testing, including adaptive functioning scale
  • diagnostic records
  • last three IEPs
  • Vocational Rehabilitation records

NEVER submit original copy records or hand in the only flash drive. In addition, since paper copies are often misplaced due to sheer volume of paperwork these offices handle, consider advisability of doing paper copies as part of the application process.

While officials at Social Security may say the breadth and depth of these records is not necessary and that the records will not be read even if submitted, FASD is an unknown diagnosis to many. This thoroughness will alleviate requests for more information.

Do not give up if denial of the claim is received, even if that denial is based on the testing that was required; if additional testing is required, you are not responsible for the cost. The denial process is outlined in this link.  Benefits are retroactive to the date of the application if appeals are utilized and the outcome is successful. If the appeal process runs its course without approval, another application can be submitted with the clock ticking again at that point in terms of benefits available to the applicant if finally approved.

An attorney is not necessary to apply, but an attorney may be needed to pursue a favorable outcome if denials are received.  The attorney is paid out of benefits eventually awarded; however, the amount is determined by the total dollar amount accrued until the benefits are awarded. This means the individual loses the benefits that are paid to the attorney. 

Once approved, a Rep Payee account needs to be set up at your bank; this will have the names of the SSI recipient and the responsible adult. 

If the recipient lives in the parental home, it is possible to charge the individual her/his share of living expenses (rent or mortgage payment, utilities, and food).  This is determined by dividing the total of those expenses by the number of people living in the home.  If that amount is less than the current payment to SSI recipients, the charge is possible.  This is not "rent," but rather their portion of the living expenses.  This payment made directly each month is easier than saving receipts for all qualifying expenses.

An annual accounting of the monies received is required.  The rep payee will receive notice of the required forms to fill out.