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"Who will care after I'm gone": an insight into the pressures facing parents of people with learning disabilities

Our research shows that families are deeply concerned about the long-term future for their sons and daughters, including the question of responsibility for their
welfare after the main family carers have died.

One in three parents say that they fear for the future of their children after they are gone. After a lifetime of struggle to secure appropriate care for their loved ones, and a constant vigil to protect them from abuse and neglect, they have lost trust in the system to provide adequate safeguards when they are no longer there to
oversee the process. One parent says: “It is like a ship heading for an iceberg and nothing happening to change its course.”

Parents told us that they have given a great deal of thought to arrangements for their children’s care in the event of their death, and have sought legal advice to prepare for the future. However, their sense of helplessness is compounded by the limitations to legal arrangements as the law stands.

A Will establishes how much money will be left to a son or daughter, but gives little assurance about how it will be used to cover the cost of care. Few parents know of the mechanism of setting up a discretionary trust which will both follow their specific wishes for future care arrangements and also protect the interests of their son or daughter. Appropriate and very specific legal advice is essential for each family circumstance.

Parents are extremely reluctant to pass the burden of care on to other children, or to members of their extended family. Although they would encourage other family members to maintain the relationship, they feel that it is unfair to expect them to assume the role left by parents. This is particularly the case when siblings have their own families to care for.