Loud & Clear: Family Conversations tackles the day-to-day and long-range issues that affect the quality of life for people with disabilities and their families. This post offers guidance from an SNA attorney and a social worker, both special needs parents, who have searched for group homes for their adult children. Readers are welcome to comment on the discussion, though we cannot answer legal questions here. For answers to specific legal questions, please find an attorney in Directory.
Michael Gulo, Esq. of Illinois and Lori Kolle of Maryland have each seen the group home selection process up close, personally, and professionally.
Gulo is an attorney and Special Needs Alliance member focused on special needs planning. Years ago, he chose residential special education schools for his son with physical and developmental disabilities. Later he placed the child, now age 36, in a group home for adults.
Kolle, a social worker, specializes in disabilities at the community-based social service agency JSSA. She is nearly finished with her first search for a group home for her 21-year-old son.
Taken together, Gulo and Kolle’s thoughts on this complicated process offer practical guidance on how to choose a group home for a loved one. Both agree on the most important principles—know your state’s system for group home placement and proactively seek opportunities.
What Are Group Homes?
Group homes offer small numbers of residents supportive living environments in residential neighborhoods. Typically, group homes are single-family houses that may be adapted for group living, including private or semi-private bedrooms with shared bathrooms and common living areas. These settings may be appropriate for people with developmental, intellectual, physical, or mental health disabilities or for elders who are unable to care for themselves independently.
Best practices in group homes call for promoting as much independence as possible for residents. Residents and their families participate to the extent possible in developing a plan with the group home to meet each resident’s individual life choices and goals which may include socializing, transportation, and participating in the broader community. Some homes may provide staffing and support at the level of daily living needs such as bathing, dressing, and eating. Others serve people who can work and navigate the community but need assistance in areas such as cooking, laundry, managing expenses, or interacting with housemates.
Approach the Search Wisely
Based on their professional and personal experiences, Gulo and Kolle offer families this advice:
Learn your state’s service system and work it. State practices will set parameters for you and your family. For instance, group home openings are filled based on the priority of need. A young adult whose only parent or caregiver has died will be placed faster than one with parents still at home. Therefore, in Illinois, the first step toward public funding for group home care is to register with the state’s Prioritization of Urgency of Needs for Services (PUNS) database. Illinois families must also meet early on with a pre-admission screening agency or an independent service coordination agency approved by the state Department of Human Services. Staying in touch with these officials is important, Gulo says, including annual reviews of your loved one’s care plan.
Know the marketplace. “You’ve really got to take the bull by the horns and advocate for your child. You’ve got to do your homework,” Gulo says. Visit the group homes in your area. Ask lots of questions and observe the atmosphere in each one closely. For instance, does the house look and smell clean? Do the residents appear well cared-for? How do the staff relate to the residents? Who administers medicine? How will residents get help keeping in touch with their families? Monitor openings as best you can. Gulo’s participation in local special needs organizations is a way he’s boosted his knowledge of what’s happening in his community.
Set flexible expectations. You may have a wish list including variables such as location, day programs, and personal supports, but ultimately you may have to take what is available when you need it, Kolle says. Waiting lists for group homes are common. Many states don’t have enough group homes to serve all who need them. Especially in smaller towns, Gulo admonishes, the first group home that becomes available may be in another part of the state.
Allow plenty of time. Kolle’s search has taken months, and families may expect as much as a year to find a placement, she says. The coronavirus pandemic has also slowed the process for her, with group homes moving cautiously to avoid infecting their residents and staff. On the other hand, Gulo notes that when a spot does open up, you may have to decide quickly whether to accept it.
Be aware that you can make changes. After your loved one enters a group home and gives it a try, if either of you isn’t satisfied with the services, you can look for another placement. Seek advocacy help from your interagency service provider, actively research other options and continue to watch for potential openings. Other sources to support you in effecting change may include a state long-term care ombudsman, a state legislator, or a member of Congress.
Find moral support for yourself. Gulo encourages identifying someone you trust who can talk over situations and decisions with you. A family member, friend, clergy member, care coordinator in private practice (more likely available in larger cities), or a mental health professional may fill this role. Kolle runs a support group for parents of adult children with disabilities. Such groups provide an outlet for emotions and stress and a safe place to meet and learn from others on the same path. Whatever route you choose for moral support, caring for yourself will help you feel more prepared to meet your loved one’s needs.
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