Home Truths. Housing options for those with special needs

Families with special-needs children often must balance many aspects. And when it comes to housing, there is a real paucity of solutions to pick from. This is especially true when you look for options after the lifetime of the parents. And the problem exists even for those who have done good financial planning to put away enough funds to provide for the expenses of their child.

The first option that parents consider is to have the child (who may be an adult when the parents are no more) live with a close relative. However, there may be often practical issues such as the caregivers not being trained or having enough time to offer required support. Also, there may be unforeseen circumstances when they may not be available, and back-up options — which take time and effort to build — need to be worked out. Potential adjustment issues may also take time to sort out.

The second option may be living with or close to a family member but with outside assistance from agencies that provide care services including escorting to different therapies or day-time activities. While this addresses many of the issues, the downside is that one needs to plan for changes in the level of required support over time. This can also be expensive and out of reach for many.

The third option is institutions that offer care. These typically take adults with different kinds of disabilities and offer standard facilities and care with a standard schedule and a large set-up to handle a range of requirements — from minimal assistance to complete care. Examples include Autism Ashram near Hyderabad that has 50 residents. The cost per child per month was estimated at ₹42,000 taking into account the staffing needs (about 100). The common concern for parents with such facilities has typically been about the lack of home environment and the potential for abuse.

New options

With increasing involvement of parents and the need for new solutions, several new models for living have come up. These range from assisted living and weekday residential facilities to alternative community living where parents share care responsibilities. Communities, it is estimated, may cost less than home care, as travel costs to use services, such as swimming pools, may be reduced as they are available on campus.

There are small proofs of these working. For example, Swayamkrushi in Hyderabad has six group homes, housing women with intellectual disabilities and care givers. Campion Hill in Bengaluru works on peer group companionship. Residents work in the community, doing housekeeping, kitchen help or farming, supported by staff.

Other examples include 120 Samarth projects that were started in 2005 to offer residential facility for 30 residents each. Alfaa near Bengaluru is another assisted care for adults with autism that has a residential home operational since last year. Ananda near Gurugram is also a new facility. Another upcoming effort is by CLAPS (Community Living Association for Parents of Special Citizens) in Chennai where a group of about 50 special families are building a community with separate living space for families and special need citizens with space for vocational and play activities. The idea is to have parents oversee the various activities, including day-to-day management, supported by paid staff; to live as an extended joint family helping each other, and continue the support even after the parents of special-needs citizens are no more.

What to check

Parents should consider a few key factors when choosing. For instance, an expert committee report on assisted living submitted to the Kerala government recommended that small groups of 10-12 people living together in a home-like environment and as a small community are more ideal than larger facilities. Also, the ideal age of entry was said to be 25-35. The community must offer activities as per skills/talents and interest to engage the residents.

You must find out about staff availability for occupational therapy, swimming and other activities. Check the ratio of residents to care-givers. In many cases, the ratio is about 2:1, and it can go as high as 6:1.

Legal aspects are very important. Covaicare, a Coimbatore-based property player that specialises in retirement communities, has created a ‘master document’ for persons with disability with information on how to set up a trust for the child and how the community trust can work in a legal framework. Parents can also talk with operational facilities such as Alfaa and other parents to get inputs on their experience. As community living is a new idea, there may be grey areas you need to ensure are sorted out and not left to assumptions.

It is also important that you have enough funds to pay for a lifetime of care. A minimum of ₹25,000 would be required for monthly expenses, and it is suggested that parents put aside at least ₹50 lakh.

The writer is an independent financial consultant

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