Planning for the Future

The greatest advice that anyone in the Huntington's Disease Community can get is to find the balance of Living for Today while Planning for Tomorrow. Philly Cure HD's website offers many support suggestions that should help you to find ways to enjoy yourself now but at the same time work to plan for your future with HD. We encourage you to follow the links to learn more about some areas that you should plan for:
Applying for Social Security Disability
Having a Family
Housing and Long Term Care
Informed Consent and Surrogate Decision Making
Be smart when applying for Social Security Disability. It is best to plan way ahead of time and to utilize all available resources to make sure your application is accepted the first time.
  • Do not apply to soon. To get Social Security Disability you are going to need to have medical documentation of your disability.
    • Before you apply for SSDi be sure you have been seen by medical professional(s) who have agreed to help you with your Social Security Disability application.
    • Be sure to share with the professionals all of your medical issues, not just HD symptoms that are beginning to make or have made employment difficult.
    • Be sure that the doctor documents these problems in his or her medical records.
    • Make sure he or she is willing to report all symptoms/disabling conditions to Social Security.
  • Here are a few resources to help you apply for SSDi:
    • Invite Philly Cure HD's Care Coordinator, Joanne Luz, to help. Contact Joanne at 215-219-3521 or joannehdcare@phillycurehd.org. She can give you tips to get you started as well as review and make suggestions on your application before you submit it.
    • Take a look at "Social Security Overview" for helpful information and suggestions.
When there is HD in the family, couples have many very difficult issue to think about regarding having a family. You will want to think ahead about future housing and long term care options You need to educate yourself and plan ahead for issues of informed consent and surrogate decision making.
  • Early planning as well as yearly discussions should take place in every family and for each member of the family about issues of informed consent and surrogate decision making.
  • You will want to understand what is meant by and how things happen related to informed consent, surrogate or alternate decision-making and court appointed guardians.
  • You need to complete the appropriate forms and share them with the appropriate people. Such forms include the Living Will, Advanced Directives, Medical and Financial Power of Attorney, and Do Not Resuscitate.
  • Philly Cure HD's Care Coordinator can begin to help you to understand and implement plans related to informed consent. Since this is complicated you may wish to see the advice of a lawyer versed in these issues. Generally lawyers who specialize in elder care law have this type of expertise.
For more information contact Philly Cure HD's Care Coordinator, Joanne at 215-219-3521 or joannehdcare@phillycurehd.org.

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