Planning for the future when you may inherit a degenerative disease

Marcon

Has you friend been in touch with https://www.hda.org.uk/ who must surely have had this sort of question before.

An even more major decision which would help with the planning might be getting tested for Huntington's. This forum is not the place for a debate on such a possibility, but I wonder if this has been considered by your friend?

FIREmenow

Is it a public sector DB pension or a large private scheme that could be named? There are a couple of very knowledgeable current/former pension administrators and experts on certain DB pensions on the forum who could help with understanding the assessment of either tier of ill -health retirement and timescales. From memory of their previous comments, the higher tier generally requires very strong evidence and is not often granted.

If what they have to live on until retirement age isn't enough, will they be able to access disability benefits? 

22225

The disease is not actually huntingdons. It is not as bad but it is a degenerative neurological disorder with a variable life expectancy, could be at least 70s. They have spoken to the national organisation for the disease who said they couldnt give any financial guidance and had no ideas and to speak to a financial advisor. It is a very rare disease.

If they were to get tested (which is actually not that straight forward as there are lots of unknown Gene's responsible for the disease - its complicated) this may make it more difficult to get insurance like income protection. They do have some protection eg pay £95 a month for £100k of protection and the underwriters have confirmed it would cover the condition. Also have around £900 a month cover in income protection which costs about £30 a month.

It is teachers pension scheme.

Maybe if the worst happened they could get some benefits eg DLA.

So people are not keen on insurance products such as these ? Is that the consensus?

Thank you