Huntington’s Disease (HD) can cause the entire family system to feel isolated and alone in trying to navigate the challenges of the disease. HDSA has over 35 social workers around the country who strive to improve the lives of people with HD with information, referrals, counseling and guidance. Recently, we talked with four social workers at HDSA Centers of Excellence and/or Chapters about their work.


Nearly every kind of problem crosses a social worker’s desk. Some of the more common challenges include:

  • Financial issues
  • Qualifying for SSDI, Medicare or Medicaid
  • Planning ahead for medical care in the home or nursing home
  • Finding (and paying for) home health care
  • Long Term Care insurance
  • Locating local resources for respite, day care, etc.
  • Pre- and Post-Genetic Test counseling
  • Nursing home placement.


Because HD is a rare disease, there are few government programs designed specifically for the needs of this community. HDSA social workers must use their creativity to find appropriate local, state and federal resources – researching everything from home health aide agencies to medical equipment providers. The variety of issues that social workers address is vast.


In this article we cover just a few of these issues. In the future, other topics will be discussed based on the interests of our readers.




Helping people plan for the future is a major part of the HDSA social worker’s job. Social workers can help families come to terms with the cost of the long term medical needs of their loved one and assist them as they develop a financial plan. “There are smarter ways to do it if you plan early on,” said Jessica Hancock, LSW.


Applying for Social Security Disability Insurance (SSDI) is another area where the experience of a social worker can be very helpful. The social worker can help answer such questions as:

  • How do I know when it is time to quit work?
  • When is it time to apply for disability benefits?
  • What are the pitfalls in the application process?


“We have an information packet about applying for SSDI,” said Peggy Polito, MSW. “We walk the person through the process and offer phone consultations to help them fill it out.”


Social workers can also help people with HD to think about advance planning issues, such as the type of care one wants during the late stages of HD and who will make the important medical decisions when the person with HD is no longer able. “It is all very humbling work,” says Amy Chesire, LCSW-R, MSG. “I try to stay in the shoes of the person with HD.”




Social workers help individuals and families deal with the stresses and challenges of HD through crisis counseling and:

  • Strategies for dealing with behavioral issues
  • Safety plans for addressing threats of violence or suicide
  • Assistance with juvenile onset HD in the home and school
  • Information on participating in clinical trials or observational studies.


Many of the social workers at HDSA Chapters also staff an HD telephone helpline. “We field questions from family members, group homes and county case workers” said Jessica Hancock. “Sometimes we just listen,” said Barbara Heiman, LISW. “When a person is listened to, they often feel better and can cope better.”


Support Groups


Social workers often act as support group facilitators. These monthly meetings help create an important support system, as many individuals, caregivers and families living with HD find themselves increasingly isolated from relatives and friends. Support groups are places where caregivers can discuss the challenges they face and share with others what strategies and approaches have worked for them.


“Our support group consists mostly of caregivers, healthcare professionals, at risk individuals and those who have been tested but are not symptomatic,” said Jessica Hancock. “Sometimes people fall into more than one group and we find that they put themselves where they need to be that day.”


“Our monthly support group in Pittsburgh often has a guest speaker,” said Peggy Polito. “Topics have included Educating the Family, Speech-Language Pathology, Occupational Therapy, Karate, Laughter and Yoga.”


Outreach and In Service Programs


Social workers from HDSA Chapters and Centers of Excellence often go out into the community to provide HD education to healthcare professionals, children and teachers in schools and the general public. “We went to the University of Pittsburgh and talked to the first year medical students,” said Peggy Polito. “We also talked to students at the School of Genetic Counseling and the School of Public Health.” HDSA social workers also visit nursing homes to educate staff on the unique problems of late stage HD, and work with medical staff to develop behavior plans to curb obsessions, reduce outbursts and create peace in the facility.



Special thanks to the social workers who spoke with us for this article: Amy Chesire, LCSW-R, MSG, HDSA Center of Excellence, University of Rochester; Jessica Hancock, LSW, HDSA Minnesota Chapter; Barbara Heiman, LISW, HDSA Center of Excellence – Ohio State University Clinic and HDSA Central Ohio Chapter; Peggy Polito, MSW, HDSA Western Pennsylvania Chapter.




This article introduces a new feature: Ask a Social Worker. If you have a question that you would like to ask an HDSA social worker in this column, please email your question to with “Ask The Social Worker” as the subject.