One of the challenge special need child-parent faces is not knowing what and how to plan for the future. Being unaware of what financial and legal issues may arise many aspects remain unplanned in their life. But this has long-lasting implications especially related to child care. Any aspect of a special needs child has to be addressed at the right time.
Drawing a timeline of your child life stages as given below (from the book “Financial Planning for Families Having Children with Special Needs”) helps in many aspects.
First, it tells you how much you are prepared for your child future. Secondly, it also brings in front the issues you need to address at various life stages of the child. As a parent, if you are aware of your child requirement then it’s ideal that you will take appropriate action at the right time
Though there can be different ways of determining your child life stages the important is to cover all the aspects. Here is how we have defined a special needs child life stages which makes it easier for parents to understand the planning points:
1. The Birth (0-3 years)
This is the first stage of the special needs child which starts with the diagnosis of the child disability. There are more emotional aspects families have to address here. The disclosing of the child information and knowing about the disability and its progress becomes a crucial event. Experts like doctors, physiotherapists, occupational therapists, speech therapists, and social workers can counsel parents on their child’s future. Parents will have to source information for services needed to take care of the child disability. Once the child reaches 3-4 years of age these sessions will begin. The assessment will be carried out and the child eligibility for education will be determined. This stage of life is challenging for parents as they will have to engage socially and disclose child disability.
2. The Minority of Special Needs Child (3-15 year)
This phase has more than any other aspects to be addressed. The medical issues, the legal issues, social issues all come in front of the parents. Parents will have to identify the right education needs and the right education support. Reach for support services and social groups will hold key for parents to work for the special needs child future. The school will start assessing the child and will monitor the progress. This phase of the life stage of a special needs child gets spent on therapies, education, and specialized sessions. There are behavioral changes as the child grows up, which parents need to understand and accommodate in their living. As the child is on therapies, medication, and other support, parents will need to provide their time and make some tough decisions, based on advice and discussions.
The other aspects for the parents to deal at this life stage will be the financials. Parents will have to open a savings account and will start investing for the child future care. The government benefits need to be identified and see what can be planned for the child. What after us will be the concern and so adequate insurance will be bought. Similarly, parents will have to look for coverage through health and other insurance. For managing finances efficiently separate budgeting for the child should be started so that parents are well aware of what is being spent and how it is impacting their finances. Planning for self and other members will also have to be started through life stages. In nutshell, a long term plan will have to be considered to plan well for their future
3. When Special Needs Child Is Adult
As the child moves to this stage of life the parents will have to address many behavior changes. The parents will have to make an adjustment in the work-life along with childcare facilities. Parents will have to start searching for vocational programs. This is also the stage where child residential needs will have to be identified especially in their absence. Wil the child stays in the same house or he will be shifted to any institution. If so then how will the child adapt to those external environment parents will have to asses. There will be many legal issues which parents will experience now and for which parents will have to plan.
Once the child turns 18 parents will no more be the natural guardian and so they will have to seek legal guardianship. Estate planners and lawyers will be the professional to assets in seeking legal guardianship. Along with it, parents will also have to see the change in childcare. Who will be the guardian who will manage child personal affairs after them will be a crucial question to answer. Will to be drafted and Trust needs to be created to safeguard the child care. The right trust structure will have to be assessed. As parents approach their retirement they will have to plan as per the lifestyle changes. Whether to continue in the same location or move to another where more facilities are accessible will have to be considered.
In a nutshell, during this phase of the child, parents have to keep themselves updated and prepared to provide a sustainable lifestyle to their special needs child.
4. First Parents Death
The succession will come in place at this stage. The entire responsibility will fall on the second parent shoulder. The going can be challenging if the second parent gas not been working throughout. How the parents support child care will depend on what asset gave been accumulated at this stage, if planning has been delayed then it’s going to be tough. For working parents, the cost of care will rise because professionals will have to be hired. How the child adjusts to the emotional loss is also going to be challenging for the parents. A complete review of planning will be required bow. Will needs to be updated and assets will have to be reallocated as per the situation. Finally, the trust funding will have to be reviewed/
5. Second Parent Death
This will be the last phase where the care of the child will completely rest with trust. The trustees will have to review the situation especially the income distribution. The remaining assets need to get transferred to the trust. Planning for the eventual death of the child and legacy distribution will also need to be addressed.
Identifying the life stages of the child and then addressing the needs is a much easier process to implement for child care. Since each life stage has different challenges it allows families to respond to the situation with more preparedness ensuring a better quality of life for the special needs child.