DISABILITY ISSUES
Vol. 19 No. 4

Help for the Homebound

by Raymond E. Glazier, Ph.D.

When we think “homebound,” chances are we visualize a frail elderly person, or at least someone with severe physical limitations. Yet there are thousands of people in Massachusetts alone who are unable to venture out of the house due to agoraphobia (an abnormal fear of having a severe panic attack in public or private areas), post‑traumatic stress disorder, panic disorders, or other equally limiting psychiatric impairments like depression. For these persons, their “house arrest” is as real as if the door were padlocked or they were chained inside.

Phobics United Foundation (PUF) is a statewide non-profit organization founded by Joyce Caggiano Hamilton in 1996 to serve the many needs of its otherwise largely unserved or underserved consumer base; there are more than 3,500 citizens of Massachusetts whose psychiatric or physical state restricts them to home. Despite its acronym, PUF is no cream puff, but a working organization that stocks a food bank, staffs a crisis phone line, and maintains an inventory of computer equipment to help consumers connect with the outside world. The foundation is registered with the Massachusetts Rehabilitation Commission (MRC) as a qualified community provider of a full range of vocational rehabilitation services, including: vocational evaluation, work adjustment training, skills training, job support services, and supplemental support services. Its staff have placed many people in telecommuting positions.

Joyce and the other volunteer staff of Phobics United Foundation are also consumers themselves, who know firsthand the full range of problems that being homebound entails: being unable to go out to work, to the store, to the pharmacy, to the doctor, to the dentist, to church or temple, to visit family and friends. They offer each consumer a range of resources, advocacy, and social contact with peers. The help might range from arranging home delivery of groceries and prescriptions to a therapy home visit to correspondence education to job support skills. In some cases the consumer can venture out if provided the company of a “safe person,” a trusted companion in whom the consumer has sufficient confidence to overcome paralyzing fear; PUF volunteers often fit that bill perfectly.

Joyce likes to tell the story of 43-year-old Raymond (not this author, but it might just as well have been), who called for help in getting excused from jury duty. He had not been able to leave home to see a doctor in 14 years, so how to get the required medical certification for the court? PUF helped him with this and a host of other problems. Raymond now enjoys Social Security benefits, an apartment and furniture of his own, regular meals, and subsidized housing. He works at home as a day care provider for working mothers and is venturing out without safe person support for part‑time employment as a landscape worker.

PUF also offers home visits by fully equipped and professionally staffed medical and dental vans, one‑on‑one cognitive‑behavioral therapy, and in‑vivo desensitization therapy. State‑of‑the‑art virtual reality therapy is just now coming into play for persons with agoraphobia and related disorders. PUF legal advocacy for its individual consumers focuses on helping them obtain absentee ballots, qualify for Social Security benefits, and get released from jury duty. The Americans with Disabilities Act’s protections are invoked to promote dignity and respect for persons with agoraphobia and related disorders.

Since the population served by Phobics United Foundation has a low profile, by the very nature of the problems of the homebound, PUF is advocating to the Massachusetts legislature for passage of the “Jake Bill,” the ultimate intent of which is to establish parity for homebound consumers with persons with other disabilities in terms of rights to care, funding, and access to services. As a first step, the Jake Bill would establish a four‑person commission to study the problem, review service programs, and issue a final report of recommendations.

To get involved in supporting the Jake Bill, or to seek help for yourself or for someone else you know who is homebound, contact: Joyce Caggiano Hamilton, Phobics United Foundation, 14 Crestway Road, East Boston, MA 02428, phone (617) 567‑5062, FAX (617) 569‑2222. Help send the term “homebound” the way of “wheelchair bound” — onto the vocabulary scrap heap. PUF’s consumers can become “home active” with the right support.