Planning for the future

To end the course, we want to think about the future.

Although we have emphasised the importance of a positive outlook and future aspirations throughout this course, many parents of children with development disabilities express fear for their child’s future. As children begin to make the move from childhood to adulthood, many parents can feel that their care of responsibilities are increasing, not reducing. This can cause a great deal of stress and worry.

So how can healthcare professionals help?

Transition to adulthood

Growing up isn’t easy. For children with developmental disabilities, this process can be particularly challenging. Throughout this course we have discussed various barriers to a child’s participation in community life. If future plans and strategies are not put in place early, these challenges can become stumbling blocks to a child’s transition into adulthood and their increased independence.

Earlier in the course, we discussed the transition of children into adult healthcare services, but what other areas should we planning towards? When thinking on these different examples, consider the needs of our case study character Lucas, who is 17 and transitioning into adulthood. Lucas has autism and lives in Brazil with his grandmother.

Transition from school to higher education

Many children with developmental disabilities target further education past secondary school, perhaps at university or college. However there is high drop off rate of young adults with disabilities when making the transition to further education. Their choice of course or institution may be limited by accessibility and the support available, especially if accommodation would require living away from home for the first time.

^{Anibal Alejandro (14) at his home in Guatemala. © CBM/argum/Einberger}

Transition from living at home to living elsewhere

Many young people with developmental disabilities will aim to live independently of their parents when they reach adulthood. This doesn’t necessarily mean living alone. This could involve residential care or shared accommodation. Independent living will require certain skills such as self-care, cooking, laundry, managing time, public transport etc.

What facilities and services can help to support this transition?

• Travel training, so young people can learn to travel on their own without fear, so they can get to work etc.
• Information on disability financial benefits
• Supported housing may be available for young people who want to live independently and still receive the care they need. This could range from onsite support to occasional visits

Transition into employment

Employment is a major life goal for many young people with developmental disabilities. Having a job means adults with developmental disabilities can contribute to society and community life. But despite their ability, desire and willingness to work, many adults with developmental disabilities are unemployed or underemployed.

What options are available to help this transition?

• Vocational training, focused on practical skills in a specific role e.g. catering, IT
• Apprenticeship schemes, which combine on-the-job training with classroom learning
• Specialist employment agencies for young people with disabilities
• Company quotas and policies which support the employment of persons with disabilities – often referred to as affirmative action, employment equity or positive discrimination

^{© CBM/Patwary}

Transition in social relationships and community involvement

As children age, their relationships and community involvement will become more complicated. Young people with developmental disabilities have the right to choose to have relationships, to marry and become parents, and to be included in community activities and groups. School offers the opportunity for children and adolescents with developmental disabilities to meet other young people and develop friendships. It’s important that they continue to access similar opportunities when they leave school.

What can help maintain a young person’s social participation?

• Employment
• Youth centres and clubs
• Leisure activities
• Peer support groups

It should be noted that the viability of these transitions will be dependent on the nature and severity of a child’s impairment, as well as environmental factors and appropriate support that are available. As noted when we discussed evolving healthcare needs earlier in the course, planning for the transition to adulthood should begin early, so it is not a sudden jump for young people with developmental disabilities.

^{© Nathan Anderson}

Preparing for a future without parents

A major concern for parents and caregivers is the thought of what happens to their child when they die or become physically unable to care for them. This is difficult for parents and families to think about, both practically and emotionally. It is important to consider however, as parents need to help plan for a child’s living arrangements, support, finances, etc.

There is often an assumption that other relatives or siblings will take on the responsibilities of care, but this is not always the case.

Role of the healthcare professional

Decisions about transition are not easy ones to make for children and their families. They often need assistance in collecting information. Healthcare professionals are central to a child’s care and will likely be the focal point for a parent’s questions and concerns. In the first instance, healthcare professionals need to be able to refer children and parents to additional services or agencies, such as employment or educational specialists.

In some instances, healthcare professionals may feel that they can help parents develop a transition plan or strategy. This may be developed in tandem with other service providers, and comes back to the need for intersectoral collaboration.