October is Down Syndrome Awareness Month—a chance to celebrate the abilities of those with Down syndrome, speak out about their needs, and encourage advocacy on their behalf. This means there’s no better time to highlight the importance of transitional services for adults with Down syndrome.
As children with Down syndrome grow into adulthood, they reach an exciting point in their lives, full of opportunities and possibilities. But it’s also a time that’s filled with many unknowns and challenges.
First, there’s how to deal with losing the social structure and support that schools offer. Parents and caregivers may find themselves scrambling to obtain services to support their adult children. And they’ll be asking questions like the following:
- Who will take care of my loved one while I am at work?
- How will my child support themself?
- What opportunities are there for my child?
Without the answers to these questions, adapting to the change is even more daunting.
To plan for a successful transition into adulthood, it’s essential to answer these and other questions. But crucial information and advice are hard to come by. The Arc of Monmouth can help. To get assistance, contact Stephanie Cardoso at scardoso@arcofmonmouth.org or 732-493-1919 ext. 122.
The good news is that there are government and non-profit agencies that provide advice and services to help transition from school to adult life.
For example, children with an Individualized Education Program (IEP) at a public school should receive help to plan their transition to adulthood. In addition, teachers, doctors, and therapists can also provide information to help a young adult to continue receiving support.
The New Jersey Department of Developmental Disabilities coordinates services, such as employment, Medicaid, and community-based support services to adults 21 and older. Another resource is The New Jersey Division of Disability Services (DDS), which provides information and other services related to disability.
Identifying the Need for Services for Adults with Down Syndrome
What makes up the right services for adults with Down syndrome depends on each individual’s unique needs and abilities?
Some may be ready to go to college, launch a successful career, or find a place to live on their own. If so, they might only need access to resources and guidance rather than day-to-day support.
Others, however, may require additional help. They may go on to live in supported housing, engage in meaningful social activities, and work in a supported environment with the right services.
Finding a Home
There are various housing options with distinct levels of support, and the right fit depends on the needs and desires of the individual. These include living...
- At home with parents or caregivers
- In a house or apartment in the community, with services to allow the right degree of independence
- In group homes with staff available around the clock or assisted living with support services
The New Jersey Housing Resource Center provides information about affordable housing.
Securing a Job and Financial Independence
Financial security is a particular concern for people with Down syndrome. A steady income is necessary for anyone to live independently. It also becomes essential as parents and caregivers get older and no longer can provide for their children.
Income usually comes from financial help such as Supplemental Security Income (SSI) or a paid job. The NJ Division of Vocational Rehabilitation Services provides employment-related assistance, including job placement and vocational support services for adults with Down syndrome and other conditions.
Some feel ready to step out and compete for work in the job market, armed with just a high school diploma and a can-do attitude. Even so, candidates may need counseling on overcoming barriers to employment such as discrimination or adapting to the workplace.
Others need vocational training to equip them with the skills they need for successful employment.
Another option is a work program, like The Arc’s Work Opportunity Center, where individuals can work in real jobs. With this arrangement, employers partner with an organization that provides a supervised and safe workspace.
Those who have lived at home throughout their childhood, fully supported by parents or guardians, may need to apply for SSI and Medicaid for the first time.
Enjoying Learning Opportunities
Some students graduating from high school may want to continue learning with further and higher education. Several colleges and universities offer educational programs to meet the needs of people with intellectual and developmental disabilities (I/DD). For example, The Arc of Monmouth runs a Keep Achieving (KACH) program with Brookdale Community College that provides college experience for people with I/DD.
Experiencing Social Well-Being and Personal Growth
Social relationships—such as those with friends, family, and colleagues—are fundamental to every individual’s well-being.
Humans are social creatures by nature and crave the company of others. Even people who enjoy their own company best and find comfort in solitude need to engage with others regularly. Isolation can quickly erode confidence and lead to boredom, stress, depression, and physical issues associated with these conditions.
That’s why parents and caregivers must make sure that loved ones with Down syndrome have the chance to meet that human need. This is especially true for people who are unable or reluctant to engage in social situations on their own.
Social activities such as adult programs, recreation, sports, and educational programs give people the opportunity to interact with others.
These activities have an additional benefit that’s important for well-being and personal development. They are enjoyable in their own right, allowing participants to exercise, learn new skills, be creative, and have fun.
Moreover, having their loved ones join these activities provides parents and caregivers with downtime to care for their own needs. They have peace of mind knowing the young adult is occupied with something meaningful.
Taking Care of Health
There are various health conditions that people with Down syndrome are more likely to have than people who don’t have the condition. Some may need regular checkups and follow-up procedures for common health conditions throughout their life.
For example...
- Heart defects
- Hearing impairment
- Infections because of problems with the immune system
- Hypothyroidism causing difficulty regulating body temperature
- Blood disorders such as leukemia, a form of cancer that affects white blood cells
- Gum disease and dental issues
- Epilepsy
- Digestive problems with certain foods
So, coordinating doctors and other medical providers to monitor and treat each individual is critical to maintaining their health and well-being.
Other therapies that can improve the quality of life for individuals with Down syndrome include the following:
Physical therapy can help build motor skills, increase muscle strength, and improve posture and balance.
Occupational therapy teaches daily skills, such as eating, dressing, writing, and using a computer. An occupational therapist may also recommend tools to help with everyday tasks.
Behavioral therapies can treat and provide coping skills for conditions such as anger and frustration, depression, compulsive behaviors, and attention deficit hyperactivity disorder (ADHD).
Thanks to medical advancements and improved care, the life expectancy of people with Down syndrome has more than doubled from 25 in 1983 to 60 today.
However, people with Down syndrome tend to get age-related health problems earlier than others. This means providing care for conditions such as dementia, memory loss, and Alzheimer’s becomes more important as adults age.
As the population ages, palliative care and other end-of-life services for adults with Down syndrome also may be required.
The Takeaway
Getting the right services at adulthood is vital for individuals with Down syndrome to help them reach their potential and live fulfilling lives. But it’s also like navigating uncharted waters. Getting those services means talking to the right people and taking advantage of the appropriate resources to help those with Down syndrome truly thrive.
Learn more about authorities and agencies that can help transition services for adults with Down syndrome. Or, if you want to support The Arc of Monmouth’s efforts to deliver such services, discover ways you can help.
