Within our society, people with Down syndrome have the same rights as everyone else. The right to vote, the right to marry, the right to work, the right to access good medical care, the right to housing, etc. People with Down syndrome have the same dreams and aspirations as anyone else about how they want to live their lives. These dreams can be achieved if each individual is given the right amount and type of support they need.
From the age of 18 a transition planning process will begin, involving the young person, their parents and school staff or PDD. At school leaving age, the young person needs assistance to make decisions about what to do next. Many people with Down syndrome stay in school until they reach 20, after which options include college, job training, work experience or day resources. In order to make these choices, information has to be presented in an appropriate manner and experiences offered. Adults with Down syndrome continue to learn new skills throughout life. Making informed choices takes practice, particularly if someone else has always made decisions on their behalf.
Important issues for adults with Down syndrome are: relationships, where to live, who to live with, what type and amount of support they need, whether to go to college or work (or both), how to spend their free time, having enough money, being with friends, having holidays and being able to enjoy the lifestyles that they have chosen.
Guardianship & Trusteeship - In Alberta, once an individual turns 18 years of age, they will automatically become their own guardian. If an adult is not capable of making decisions independently, a formal court order is needed in order for someone to be appointed as a formal Guardian and/or Trustee.
Adult guardianship | Alberta.ca
Trusteeship | Alberta.ca
AdultGuardianshipAndTrusteeAct.pdf
Transition Guidelines for Dependent Youth - Alberta Health Services
Disability Tax Credit - Federally administered tax credit intended to offset living costs for those with a severe and prolonged impairment
Disability Tax Credit Information
Registered Disability Savings Plan (RDSP) - Federally administered savings plan for those eligible for the Disability Tax Credit
- Apply once you’re accepted for the Disability Tax Credit
- Eligible to contribute until the end of the year the beneficiary turns 59
Registered Disability Savings Plan (RDSP) Information
Registered Disability Savings Plan (RDSP) vs. RESP & RRSP - Comparison
Inclusion Alberta - Disability Tax Credit and Registered Disability Savings Plan
The Family Resource Centre at the Gateway Association offers workshops and individual support to help new applicants understand, navigate, and manage their RDSP.
Gateway Association Family Resource Centre
For many people with Down syndrome, obtaining satisfying employment is extremely important. There are programs that offer on the job training that enables a person with a learning disability to receive help and support on the job until they have mastered all of the skills necessary to do the job independently.
Getting Started:
ALIS Alberta is aimed at helping people entering the workforce refine their career goals by offering career planning and employment resources. These resources are a great first step when considering what type of employment would fit you (or your loved one's) skills and abilities, and to gain an understanding of how to navigate the employment landscape with a disability.
ALIS Alberta - Workplace Resources
ALIS Alberta - Resources for Persons with Disabilities
Employment Programs:
While every employment services program will run a little differently, most provide support through assessing the skills and interests of participants, providing resume reviews and interview support, direct supervision during the workplace orientation process and ongoing, as-needed support aimed at retaining employment. Some programs partner with local businesses in order to provide job placements, and some may help participants in obtaining certain job-specific certifications, particularly in the trades. Listed below are structured programs that specialize in helping job seekers with disabilities gain meaningful, long-term employment.
Chrysalis - Programs & Services
Selections Career Support Services
Gateway Association Employment Resource Centre
EmploymentWorks - Centre For Autism Services
Studio C Prospect - Art Referral Form – Alberta, Canada
Further education can offer the chance to increase life skills and independence. Some colleges have a good range of inclusive courses where people with Down syndrome can study alongside other students. Other courses are more specifically geared towards people with learning disabilities.
ECALA Funding (Edmonton Community Adult Learning Association)
Courses and funding for adult learners facing social and financial barriers to further education. The ‘learning opportunities’ section of the website has classes primarily focused on improving literacy.
Inclusive Post-Secondary Education - Inclusion Alberta
A program offered by Inclusion Alberta geared toward those interested in pursuing a college or university degree. Participants are paired with an Educational Facilitator and audit courses in an area of interest. Throughout their degree, participants work with the Educational Facilitator to create an individualized program of study, get involved in campus life, and build an employment network.
Foundational Learning Assistance - Alberta
Provincial funding for unemployed or underemployed students preparing for or seeking further education. Covers both educational costs and any associated living expenses.
At this stage, a large part of maintaining a healthy lifestyle goes beyond physical health, with mental health and social well-being playing an equally important role. The transition from adolescence to adulthood can be stressful or make previously diagnosed conditions more difficult to cope with. This can also be a time of major losses and changes within someone's support system, such as a sibling going off to college or moving away after marriage. Provided below are some adult mental health and social supports that provide opportunities to connect with others in the community and build a support system.
PLAN Canada - Lifetime Support for People with Disabilities
LoSeCa Foundation Day Supports
The Nina Haggerty Centre For The Arts
Chrysalis Day Program and Creative Arts Program
Health Maintenance:
Nutrition
- Practice healthy balanced eating habits
- fruits, vegetables, lean proteins, whole grains, healthy fats
- Adequate hydration
- Adequate fibre intake to address frequent gastrointestinal issues and constipation
- Consult with physician for vitamin c and calcium supplements for bone issues
- Monitor health through balanced meals
- Incorporate weight exercises to increase muscle capacity
- Monitor for obesity by plotting height for weight.
A Guide to Good Health for Teens & Adults with Down Syndrome (Amazon)
Regular/Annual health screenings:
- Cardiac evaluations, regular echocardiograms.
- Thyroids function tests (TSH and T4).
- Vision and hearing (looking especially for keratoconus and cataracts).
- Monitor mobility.
- Cervical spine x-rays as needed for Special Olympic participation and/or if symptomatic.
- Bone density tests~increased risk of osteoporosis.
- Dental check ups.
- Mammography: a mammogram every other year beginning at 40, and yearly beginning at 50.
- Testicular exam yearly as increased risk of testicular CA in this population.
Additional health screenings:
- Sexually active women will need pap smears every 1-3 years following the age of first intercourse.
- Women who are not sexually active will need a single-finger bimanual examination with a finger-directed cytology exam. Women who refuse or have inadequate follow-up bimanual examinations will need a screening pelvic ultrasound every 2-3 years. This may require referral to an Adolescent Medicine practitioner or a gynecologist who has experience with individuals with special needs. Otherwise, pelvic ultrasound may be considered in place of pelvic examinations.
Advocate Health - Women's Health & Down Syndrome
For older adults ages 30 - 50:
Neurological assessments
- Monitor for early onset Alzheimer's Disease (loss of independence in living skills, behavioural changes).
- Monitor for symptoms of dementia (decline in function, memory loss, ataxia, seizures and incontinence of urine and/or stool). This may also represent spinal cord compression from atlanto-axial subluxation.
- Cognitive evaluations to track memory and reasoning
Developmental:
- Continue speech and language therapy, as indicated. For individuals with poor expressive language skills, consider referral for augmented communication device.
- Be aware that accelerated aging may affect functional abilities of adults with Down syndrome, more so than Alzheimer disease.
Equipment Resources:
Alberta Aids to Daily Living - AADL - Alberta Aids to Daily Living (AADL) is a Government of Alberta program that provides basic equipment and supplies to Albertans with a long-term disability, chronic or terminal illness.
Adult Equipment Program – Easter Seals – Age 18+
Our program is designed to support Albertans by providing access to essential accessibility equipment that enables greater self-reliance and connection to their communities. Whether you need a mobility device, lift, or other equipment, we’re here to guide you every step of the way.
Adult Equipment Applications (Ages 18+) - Equipment Loan Program - Easter Seals Alberta
Until more recent years, many adults with Down syndrome continued to live at home with their parents. Nowadays, young people often prefer to live independently from their families, although they may move away from home at a slightly later age than other people.
There are various housing options available – many homes are owned and staffed by housing associations. People can choose to live within a small or large group and various levels of support are offered, depending on individual needs. Some people choose to live alone and in other cases, some families are in a position to purchase a home for their adult child.
STEPS To Independence is a guidebook that provides an opportunity for individuals with an intellectual disability to determine how prepared they are for semi-independent living. It is a holistic tool to prepare someone for semi-independent living by identifying current skills, determining skill areas for improvement (where more learning can happen), and next steps to focus on.
STEPS to Independence | ConnectABILITY
Consider what kind of supports you’ll need when living independently. While most of these resources offer round-the-clock care, others offer supportive independent living arrangements, which provide more casual, yet just as comprehensive, check-ins at less frequent intervals. A referral from Persons With Developmental Disabilities (PDD) is required to access many of these services.
Find Seniors & Disability Housing - Alberta
Excel Society - Supportive Living Services
Easter Seals Alberta - McQueen Home
Shepherd’s Care - Eden House
McMan Youth, Family & Community Services
LoSeCa Foundation Residential Services
Entrust Centre Residential Care
- Discuss plans for alternative long term living arrangements.
- Continue dietary and exercise recommendations (see childhood, above).
- SBE prophylaxis needed for individuals with cardiac disease.
- Discuss estate planning and custody arrangements.
- Encourage social and recreational programs with friends.
- Register to vote at age 18.
- Reinforce the importance of good self-care skills (grooming, dressing, and money handling skills).
- Bereavement counselling for individuals who have experienced the loss of an important person in their life, either via death or by other circumstances: sibling moves away after marriage, or goes off to college.