Adulthood and Fragile X Syndrome

Difficulties in adulthood often begin with the transition from adolescence into adulthood and continue throughout their lives. As they age, common issues families face include housing, employment, and transportation. However, with support and intervention strategies, adults with Fragile X syndrome can lead fulfilling and meaningful lives.

The Individuals with Disabilities Education Act (IDEA) ensures disabled students are provided with what’s called “Free, Appropriate Public Education,” which is tailored to their individual needs through age 21 – though there are some state-by-state variations in age. Individuals with FXS typically leave high school and attend transition services for ages 18–21 (or the age in your state), then move into adult services. This is when the services under IDEA come to an end.

There is currently no equivalent law that guarantees adult services after IDEA. Importantly, after the young adult leaves high school, it is up to the parents and caregivers to set up the person’s day — 24 hours a day, seven days a week.

State Adult Services Contacts

Your State Education Contacts

Here you’ll find your state’s:

• Department of Education
• Higher education agency
• Special education agency
• Adult education agency

Hopefully, people from one or more of these organization have been coming to your IEP meetings during high school. Check in with them to see how long the wait lists are, and make sure the young adult is on the correct wait list for the services that they will need.

Local Arc Chapter

Arc is a national organization, with state and local chapters, who advocate for people with disabilities.

If there is not a chapter near you, contact the national office.

State Vocational Rehabilitation Agency

Many applicants are referred by schools, hospitals, welfare agencies, and other organizations, but you may apply directly for service.

Also see Centers for Independent Living, which provide job coaching and training for people with disabilities to maintain their independence.

Community

Also seek out other parents in your community who have adults already in the system, regardless of the disability. And visit our NFXF Community Support Network to locate your local NFXF chapter, association, or individual community contact.

Transitioning to Adulthood Checklist

When looking into life after high school for your loved one with FXS, knowing where to start can be a challenge. Our free checklist includes age-by-age checklists to ensure everything is covered for both the individual and their parents and caregivers.

Please note that the checklist is not conclusive. One of the most important things about transition planning is to check with your state on which and what level of support they might provide. It is also important to plan the transition based on the specific wants and needs of the individual with FXS; what works for one person may not work for another.

There are a variety of transportation options to consider for an individual with FXS, and hopefully, some will be a continuation of what was started during the high school years. While there is a range of abilities in people with FXS, the goal is to make the individual as independent as possible. A second goal is to get the individual out of the home or living setting every day, as agoraphobia (fear of leaving the home) can happen to people with FXS as they age.

Adult Transportation Considerations

• Unsafe Conditions: While the goal is to teach skills and independence, care should be taken to minimize potential unsafe conditions, such as traveling alone at night or to places that may be unsafe, or if there is the potential to have inclement weather. Some individuals with FXS will not be deterred from situations that other people with FXS may not even attempt.
• Always Carry ID: The person with FXS should always carry a government-issued ID with them. Contact your local Department of Motor Vehicles for more information in your area.
• Teaching Aids: Depending on the person with FXS, the use of visuals and social stories can help with teaching them about the various transportation options.
• Consider a Tracking App: There are a variety of ways to know the location of the person with FXS using today’s technology. Many of us already do this with all our family members, it’s a great way to watch out for each other. It can be as easy as sharing your location!
• Transportation Options: Consider teaching a variety of transportation options or at least exposing them to various options. Continue reading below for more.

Transportation Options

• Driving for Them: Whether the individual is living at home or outside the home, driving the individual will be used for many activities, particularly if the person has difficulties using other modes of transportation or when it is important that the parent or care provider attend the activity, such as a doctor appointment.
• Driving Themselves: Many people with FXS will be able to get a driver’s license. Check with your local DMV for information regarding special accommodations that the person may need, such as extra time to take the test.
• Paratransit: Paratransit is the term used to describe transportation services for people with disabilities that are designed to be more individualized; they may provide services along a set-route, or they may provide door-to-door services for the person with FXS. They may also provide bus training for individuals. You can begin by contacting your state’s transportation department.
• Walking: Depending on where the individual lives, walking might be a great option. It will be situation and location dependent, but walking is a great way for the individual to get to know the area where they live, to get a chance to meet people who live nearby, and to get exercise.
• Riding a Bike: Depending on where the individual lives, riding a bicycle might be a great option for getting around town. It will be situation and location dependent, but like walking, riding a bicycle is a great way for the individual to get to know the area where he or she lives, to get a chance to meet people who live nearby, and to get exercise.
• Riding a Bus: Another option for transportation around town, and even beyond, is taking the public bus. It does have its own set of challenges, but once a person begins to understand the nature of public busing, it opens the geographic area of travel even wider.
• Uber, Lyft, or Other Rideshare Apps: This is another transportation mode to consider for the individual with FXS. The person with FXS may be able to set up a ride by themselves or a parent may do it. Research the app and talk to people who have used the services to see if one is right for the person with FXS.
• Airplane: Airplane travel is usually used for cross-country or out-of-county travel. While airport travel is often with families or other groups, individual travel may be needed in some cases. Like other modes of travel, discuss what to expect, create a visual or social story, show pictures found on the internet, and, if possible, do a practice run at the airport. No matter what, allow for plenty of time.
  

  ---

  TIP: If the person with FXS needs or wants practice in going through the airport experience, call your airport to see if they have special days set aside for people with disabilities to go through an airport. Also check with your local Arc, as they have set up a special program at many of the airports across the country.

  ---

• Mass Transit Systems: Systems such as a subway, light rail, or Amtrak, are similar to but more complicated than a public bus. Individuals may be fine traveling during the day, but evening and nighttime travel should be limited. It is also wise to travel in pairs or a small group.

There are a range of living situations that may be considered, everything from a more segregated setting to an independent setting. Options might depend upon the person’s level of independence and the source of funding, among other factors. Review potential locations for your young adult carefully.

You might consider Section 8 Vouchers, a federal Housing and Urban Development program for assisting very low-income families, the elderly, and the disabled to afford decent, safe, and sanitary housing in the private market. Find information for your state from HUD.

If you are looking at different housing options, also see our free e-book, Adults with Fragile X Syndrome: Making a Better Tomorrow, which includes:

• Living Settings Checklist (p. 32)
• Sample Interview Questions for a Care Provider (p. 36)
• When Your Young Adult Moves Out (p. 39)

Housing Considerations

• Location: There may not be options near you or the options may not be best for the person with FXS.
• Roommates: If receiving public funding, parents cannot usually pick the roommates, that is, there is little control over the people who live with the person with FXS. The roommates could also change, and this could happen without your knowledge.
• Staff Turnover: There can be frequent staff turnover.
• Educational or Life Skill Components: Consider whether you want a situation that is more educationally based, such as college, vocational, or other life-skill opportunities and activities.

Frequently Asked Housing Questions

When do I start looking for housing?

When your young adult is in high school. But it is never too late.

Where do I start?

Start with your local disability organization, Arc, other families and parents in the Fragile X community and your local community.

What should I ask?

Consider questions such as:

• How does the housing system work in our state and county?
• What are the different housing options?
• What do I have to do to move this process forward?
• Is there (or how much of) a wait list is there?
• How do I get on the wait list?

Why isn’t there a single source of the housing options near me?

The options vary widely from state to state, and often even from county to county. And the needs of people with FXS vary widely as do the “wants” of their parents, caregivers, and loved ones. Try creating a list of what is important to you and your young adult with the goal of creating a list of housing options that will meet both your needs.

We have hosted several webinars on different housing situations with families and professionals, including what has worked well — and what hasn’t! Here are two to get you started:

Housing Options for Adults With Fragile X Syndrome

Guided by moderator Jayne Dixon Weber, our three guests — Dushawn Powell, Anita Inz, and Susan Buchanan — discuss adult housing for individuals living with developmental disabilities from the perspective of parents and social workers.

Housing Options for Adults With Fragile X Syndrome: Parents Share Their First-Hand Experiences

Guided by moderator Hilary Rosselot, our four guests — Susan Buchanan, Nancy Carlson, Tracey Franks, and Ileen Rissmiller — discuss adult housing for individuals living with developmental disabilities from their perspective as parents.

NOTE: Add webinars here: 

• Employment Strategies and Successes
• Females and Fragile X Syndrome
• Being Prepared for Adulthood

When looking into life after high school for the individual with FXS, it is important to include at least one regular daily activity. Examples of daily activities could be working at a paying job, volunteering with a local organization, participating in a day program, or attending post-secondary education. The individual might even like or prefer a combination of those activities. Whatever is decided, it is important to keep them engaged, interested and active in the community every day.

During High School

To best prepare, start to ask questions to inform you of potential options while the person with FXS is in high school, or even before! Examples of questions include—

• What job or volunteer experiences do you offer while the person is in high school?
• Are they only job experiences or do you help the person actually find job for when they leave high school?
• How does the program work? For example, as a 9th grader, do they work or volunteer one day a week, as a 10th grader — two days a week, and so on.
• Who provides transportation?
• Does a para go with the person?
• Is it individual programming or it is group work – how big are the groups?
• How long does each job experience last?
• What if the person does not like the job – can it be changed earlier?
• What are some of the job experiences that are currently provided

Curious about what places have a reputation for employing individuals with disabilities? Read our blog to find out: Employment Opportunities for Your Young Adult

Transition Programs While Still In School

Transition programs are generally programs for those 18 through 21 years of age, though some state school districts offer services for longer. These programs vary widely on what they offer, so be sure to look into how your school district functions.

Once the transition program ends, the person with FXS will move into adult services. This is when the services under IDEA come to an end.

When School Services End

Regardless of what you are able to set up when school services end, set a daily schedule for the individual with FXS right away, even if it is a general one. You can always add to it or revise it later. A visual schedule will help both of you — it sets expectations, and it gives the individual structure, routine, and knowledge of what will happen each day. As much as possible, be sure to include leaving the house every day, as many individuals can get to used to staying at home and not want to leave. Include the individual in setting the schedule.

It is important to include at least one regular daily activity—and if it’s outside the home or living situation — even better. Examples of activities include day programs, volunteering, full or part time employment. Every state has a federally funded Bureau of Rehabilitation Services that helps people who have physical or mental disabilities get or keep a job. To find out if the adult with FXS qualifies for services, contact the local Vocational Rehabilitation Services in your area for more information.

Finding a Job: Build on Strengths and Interests

Finding a job for your adolescent or young adult is similar to the process that everyone goes through to find a job. Look at the jobs the person had in high school, their overall strengths, and find out what they are interested in doing. This will lead to the development of a list of “potential” jobs.

Basic Guidelines to Consider in Determining an Ideal Work Environment:

• Personal talents and preferences, learning style, and tolerance levels for various stimuli such as noise level and social interaction.
• Location in relation to transportation needs and what level of supervision is needed.
• Sensory processing issues and how it might relate to the job.
• Consider each of the potential jobs and evaluate them in light of the their skill set — including skills they might still develop.
• What support they might need — both initially and in the long term.

Developing Appropriate Work Attributes

Areas include dress, hygiene, punctuality, manners, speech, attitude, behavior, personal/workspace, illness, and asking for help.

See 8 Employee Attributes to Teach Your Young Adult for more.

Employment Resources

Here are some resources and tips to get you started:

State Vocational Rehabilitation Agency

services are available in every state and are available to help individuals with disabilities find and keep a job. Many applicants are referred by schools, hospitals, welfare agencies, and other organizations, but you may apply directly for service.

Find Your State’s Vocational Rehabilitation Agency

Also see Centers for Independent Living, which provide job coaching and training for people with disabilities to maintain their independence.

Association of People Supporting Employment First

Includes a great resource directory at the federal and state levels.

Visit People Supporting Employment First

Local Intellectual-Developmental Disabilities Agencies

Your county or state likely has a developmental disability services office or board. These can be good places to start when searching for any local resource, employment-focused or otherwise. Your waiver status may determine what information or services are available to you. Be sure you ask lots of questions!

The National Association of State Directors of Developmental Disability Services has a map and list of each state’s intellectual/developmental disabilities (I/DD) agencies.

Also, check out the Administration for Community Living, which has a list of statewide independent living councils and centers for independent living by state plus a list of aging and disability networks.

Federally Funded Colleges and Universities

If you’re at a college or university that receives federal funding, they are required to have accessible programming for individuals with disabilities. They likely have an office of disability services — or something similar — that you can reach out to learn more about.

Job Accommodation Network

Locate your local state vocational rehabilitation agency and learn more about accommodations for job seekers from their list of information and resources for job seekers.

They also have helpful tips and tools for disclosing, requesting, and advocating for yourself in the workplace.

More Resources

• Department of Health and Human Services
• Aging and Disabilities Networks
• Department of Public Health

Know that the individual with FXS may end up working at many jobs throughout their life, as many of us do! Focus on a job or jobs the individual will enjoy and thrive in — for now — and don’t forget to be flexible.

Employment Strategies and Successes

The NFXF hosted a one-hour Q&A session is filled with inspiration, insight, and helpful tips from their individual employment successes.

Watch: Employment Strategies and Successes

There are more people with FXS attending college than ever before. Partly because of increasing awareness of the incredibly abilities and strengths of those with FXS, and partially because colleges are increasingly welcoming and set up to support people who have different abilities. Education can be useful for both a degree and training in a field of employment interest, as well as a next step in independence for the student.

A great resource to start with is Think College. Think College is a national initiative dedicated to developing, expanding, and improving research and practice in inclusive higher education for students with intellectual disability. It is based at the Institute for Community Inclusion, University of Massachusetts Boston

Many more helpful links, things to consider, and stories from females, males, and their parents about what college has been like can be found in Chapter 5: COLLEGE FOR INDIVIDUALS WITH FRAGILE X SYNDROME in our Free eBook: Adults with Fragile X Syndrome: Making a Better Tomorrow

Additional Websites:

• Association of University Centers on Disabilities
  Postsecondary Education
• College Resources for Students with Disabilities
• Kentucky Department of Education
  Postsecondary Education Resources
• Think College

As the individual with FXS becomes an adult, thought and care should be given to making their life as fulfilling as it can be. It is also important to help them be as independent possible. It is never too late to start, and with time and a thoughtful process, skills can continue to be learned.

From speaking with countless families and professionals, there are core categories important to daily life. These categories include—

• Daily schedule
• Staying healthy
• Healthcare
• Social life & relationships

Daily Schedule

The importance of making and keeping a daily schedule is emphasized throughout transition planning. This is no different for daily life! The three best tips are—

1. Make and keep a daily schedule
2. Get out of the house everyday
3. Have an expectation that everyone will do chores

Dive deeper into strategies and things to consider in Chapter 6: DAILY LIVING in our Free eBook: Adults with Fragile X Syndrome: Making a Better Tomorrow

Staying Healthy

Staying healthy is essential as individuals with FXS age. Taking care of one’s health helps promote independence and improve the overall quality of life. Regular exercise, proper nutrition, and self-care can boost energy levels and reduce the risk of other health problems.

Exercise

Many individuals with FXS find it difficult to engage in physical activities without support and encouragement. The physical challenges associated with FXS, like low muscle tone and lack of visual-spatial skills and awareness may affect the likelihood of consistent exercising. With a little help from a personal trainer, friend, or family member, and the right setting (it doesn’t have to be a loud gym with lots of people, a park will do!), individuals with FXS can find a good exercise routine.

Nutrition

Proper nutrition helps us fuel our bodies! And ensuring good nutrition is easier said than done; especially when sensory sensitivities are present. Help the individual with FXS with their nutrition by introducing healthy choices that can be maintained long term and even made independently. Good guidance about balanced meals exists, and remember, it’s OK to have a treat sometimes!

Hygiene

Hygiene can be neglected by individuals with FXS, commonly due to sensory challenges and sensitivities. Several strategies for dental care, bathing and showering, and toileting are discussed throughout our Adult ebook and Transition to Adult Services for Individuals with Fragile X Syndrome Treatment Recommendation.

Healthcare

Healthcare is an important aspect of life; from access to taking care of physical, mental, and emotional health, the term healthcare encompasses a lot. Individuals with FXS need surveillance just like all of us, and especially as we age.

Routine Healthcare Visits (Preventative Care)

Routine healthcare visits are vital to overall health. Some examples include dental checks to maintain teeth in good condition; eye checks to detect and treat glaucoma; blood pressure, cholesterol and sugar checks to minimize the risk of stroke, heart and kidney disease and colonoscopies to prevent bowel cancer. These examples are recommended by most primary care physicians as part of a general preventive health screen in accordance with health authority guidelines for all individuals.

You can find a general care plan checklist in the NFXF Treatment Recommendation, Transition to Adult Services for Individuals with Fragile X Syndrome (Adult Services for Individuals with Fragile X Syndrome).

Medical Issues

Sometimes what are seen as behavioral or emotional challenges in individuals with FXS may have an underlying medical cause; this is one of the reasons why having a primary care physician is so helpful. It can be helpful to seek an opinion from a doctor to exclude a medical cause of any changes in behavior, especially if it persists.

You can find more information and a list of medical problems associated with Fragile X in the NFXF Treatment Recommendation, Transition to Adult Services for Individuals with Fragile X Syndrome (Adult Services for Individuals with Fragile X Syndrome).

Finding A Doctor Who Sees Adults with FXS

Most parents find it difficult to move from their pediatrician to a doctor who specializes in adults. The NFXF has produced a webinar related to transitioning from a pediatrician to a doctor who sees adults with FXS.
During this process, it is important to guide the adult into a new environment by following the several strategies used when supporting any transition, for example, the use of visuals. The environmental changes may be familiarized by photos of the new office building, waiting room, examination rooms and staff. In addition, a meeting with the staff with an exercise of bringing cookies or other treats to the staff by the adult with FXS before the initial appointment usually pays off.

Not all physicians are comfortable treating individuals with an intellectual disability (ID), so it is critical to talk with other parent groups as well as local disability organizations to get names of those physicians who might be a better fit. Many physicians do not feel comfortable treating psychiatric symptoms so it may also be important to find a psychiatrist or Nurse practitioner who treats adults with intellectual disability.

Some Fragile X Clinical & Research Consortium Clinics can see individuals with FXS into adulthood. Some of these clinics can also work with your local doctor if they want to learn more about FXS or have questions about medications.

Medications

As a Consensus of the Fragile X Clinical & Research Consortium, the most current and up-to date guidance can be in the Treatment Recommendation: Medications for Individuals with Fragile X Syndrome.

General Recommendations for Adults: It is important to avoid adding new medications every time an adult has a crisis, and it is important to make every attempt to avoid adults being overmedicated with high dosages and with many medications at once.

Social Life & Relationships (Behavior)

Many more helpful links, things to consider, and stories and strategies from families can be found in Chapter 6: DAILY LIVING in our Free eBook: Adults with Fragile X Syndrome: Making a Better Tomorrow

Aging and Disability Networks | ACL Administration for Community Living

General aging, adults with DD, transition:

• The Arc: Aging
• The AAMR: Fact Sheet: Aging: Older Adults and Their Aging Caregivers
• Got Transition: Federally funded national resource center that aims to help youth and young adults move from pediatric to adult health care.
• Social Security Administration: Benefits For People With Disabilities
• When a Child Turns 22 — Advice for Families and Caregivers: Adults with special needs have their own emotional, social, career, financial, legal, and medical concerns that parents should address before they turn 22.
• Guardianship, estate planning, power of attorney, Medicaid, and SSI are all important issues that are beyond the scope of this resource. Guardianship and power of attorney, especially, vary drastically by state and other jurisdictions, so it’s important to seek local legal counsel. Your local ARC can be a useful resource for these important topics.
  • To find information about adult resources in your state, try searching for:[Your State] Adult DD Services
  • To find information about transition services (from high school to adulthood) in your state, try searching for:[Your State] Transition Services

Employment:

• Administration on Developmental Disabilities – Developmental Disabilities Program
  Area of Emphasis – Employment
• The Arc – Employment Issues for People with Disabilities
• Centers for Disease Control & Prevention – Developmental Disabilities
• Therapeutic Recreation Directory & Activity and Treatment Ideas for Recreation Therapy
• U.S. Equal Employment Opportunity Commission – Questions & Answers About Persons with Intellectual Disabilities in the Workplace and the Americans with Disabilities Act

Housing:

• Administration on Developmental Disabilities
  Developmental Disabilities Program
  Area of Emphasis – Housing
• The Arc – Housing Issues for People with Disabilities
  • To find information in your state, conduct an Internet search for:[Your State] Housing for People with DD (or developmental disabilities)