Where will the special needs child live? Is community living a good option? If s/he lives at family home who will care for him when we are not around? All these questions rise when parents start thinking about the future of their special needs child. The residential needs of the child after their lifetime is a higher concern. Though a few options are available each one of them has its advantages and disadvantages.
Before taking a decision parents should explore each of the options and see what suits best for their special needs childcare.
Listed below are the options for future living arrangements for special needs dependents who require lifelong support. All options cannot suit all families and so one need to analyze where the special needs child will be more comfortable.
The Family Home with Support
Here the child may continue to stay in the residence parents are living or they have arranged for. The child may have siblings, extended family or friends around. Some staff may be hired for the special needs care monitored by the family members present. This option may be the most liked one since the special needs child will continue to stay in the family environment. For parents this brings great security to childcare. However, beyond a certain limit identifying a family member to oversee the child personal affairs is quite difficult.
The advantage of this option includes:
- The child stays with loved ones
- The Special Needs continue to have a family environment which most parents wish for
- There will be support from the family and staff will be hired to meet the living requirements
The disadvantage of this option includes
- The adult will be deprived of the benefit of living with peers
- The families may not find a family member to support after a certain age
- Parents themselves may find it difficult to support at a higher age
- The chosen family member may find it difficult to take up full-time care taking
Assisted Living for Special Needs
With increased awareness assisted living is resolving the concerns of many parents. In an assisted living the special needs child stays in a common room of an assisted living facility. The facility may be designed for multiple adults with one or more range of disabilities. The provision in assisted living will include housekeeping, laundry, meal preparation, transportation, 24-hour staff and onsite medical staff. The assisted living facility will also include social and recreational activities as well as employment and daily skills living.
Overall an assisted living facility will provide all the services except the surroundings of family living. Both large and small setups have started emerging in India which may prove vital in addressing the residential concern for the special needs child post parents lifetime.
The advantages of residing in an assisted living facility include:
- There is support for long term daily living
- On-site medical staff is available which can provide Physical and Occupational Therapies
- Transportation services are available all time
- For special needs living with peers who have disabilities provide many benefits socially
- Since the residence is almost permanent there is a stability of living
- The special needs get opportunities to participate in classes and activities which is needed
All said there is one disadvantage of residing in assisted living. The special needs are separated from the general community and institutional set-ups are not as intimate as a family setting. However, for many families with no support around after them this option may be the best suited one. What needs to be decided is when the special need should move here as it may need relocation. The special needs child may take time to adapt to an external environment when s/he has been living in a homely environment.
Group Home for Special Needs
A group home will provide residential facilities to one or more adults with disabilities. This set up is formed by the families themselves. A temporary or permanent staff may be hired to support house mates in special needs child care. These setups are ideally a smaller version of institutional setup.
The advantages of a group home include:
- The special need has support socially, emotionally and physically
- The resources are pooled by families themselves to hire support staff
The disadvantages of residing in a group home are the same as an institution set up. The special need will have separation from the general community, as the child would live only with people who have disabilities.
When parents have decided what kind of residential set up will be best for their child the funding sources have to be identified. The funding amount will vary based on the option which you decide. If the child stays in a group home the fund required may be more while if the child stays at own house the fund required may be less. Whatever the parents decide for the child residential needs the analysis of adequate funds for a lifetime has to be analyzed and provide for. Here are the three ways in which the funding resources can be provided:
- Trust: The funds can be set up in trust which will fund the regular expenses and all others of the childcare. A private trust is considered to be the most viable option since it’s a seperate legal entity and brings continuity to child care for the lifetime.
- Funds to the Institution– Options are emerging within the residential setups where the fund for the childcare is set up in a private beneficiary trust managed by the institution themselves.
- Funds to the Child: This can be thought of if the child stays at home. The funds, even though in child name, are managed by the legal guardian appointed by the family, after parents’ lifetime.
All of the above funding resources are viable but which option to choose will depend on the residential home decided.
While deciding on the residential homes for the child parents need to analyze many aspects in detail. How is support staff, what facilities the set up has, can the child care be monitored from a distance, how far it is from the city and many others. Some really good set up can be a boon for the special needs child lifetime care.
There is no ideal living arrangement that can provide solution to every adult with disability. As the child grows up to an adult and reaches to a higher age the needs will change. This will bring the change in the residential requirement and so parent have to evaluate taking these changing needs in consideration.
1 comment on “Future Living Options for Special Needs Child”
Re: Personal finance query
Financial Security and estate planning for families having persons with intellectual developmental disability
Under an NGO (charitable Society registered under The Societies Registration Act 1860, one hundred families with PwIDD (Persons with Intellectual developmental Disability) as Members of the Society want to form individual private trust with the PwIDD as the sole beneficiary to financially secure the PwIDD’s future. Each family would live in own house/flat with the PwIDD in the same campus as Community living, availing common facilities such as common kitchen, the vocational training center and care homes built pooling their own funds in the NGO. Besides the NGO taking life long care of each PwIDD after demise of the parents (shifting the PwIDD to care home after demise of both the parents after selling the house/flat to the next eligible new family and investing the sale proceeds of the house/flat for the sole benefit of the PwIDD), NGO will also give free respite care(only day care) for poor special needs in around the location in the village.
1) Estate planning for financial security needed mainly after the demise of the parents entails need for institutional and legally acceptable entity like a trust having sufficient funds (investment corpus) to meet the PwIDDs recurring life long daily expenses (&life long care) after the demise of parents, though successor legal guardian will be appointed. One popular option in practice is forming a private trust.
2) Instead of one hundred individual PwIDD trusts (requiring several trustees) causing high administrative cost and difficulty in identifying trustworthy, knowledgeable and able Trustees, can a few Pooled Trusts (having individual PwIDD-wise separate Sub-accounts) – say 10 Pooled Trusts, each having ten Beneficiaries?
3) If so, what will be the income-tax implication for each pooled trust? Since the income is non-business and purely to use for life long care of the PwIDDs, can we apply for tax exemption if as per current income tax law, it is taxable?
4) For achieving the above objective, can we form Trust as Public Trust instead of Private Trust?
P K Jayaram🙏