Ideally, children live at home with their parents or with other family members. Children with developmental disabilities are no different. But from your own experience, you know that children with developmental disabilities often require more of everything — more time, more assistance, more attention, more support.
Thankfully, you don’t have to go it alone.
At Regional Center of Orange County, our goal is to ensure that a child with developmental disabilities can remain at home with his or her family. We are here to work with you to secure the “mores” you need in the way of services and supports for your child, and are committed to building a partnership with you that includes both your regional center service coordinator and the therapists and specialists whose skills may be necessary to meet your child’s special needs.
Still, there are rare occasions when remaining at home may not be a viable option for a child or family. Perhaps a child’s needs are too overwhelming or his or her health is too fragile, or your family may be undergoing other insurmountable challenges and difficulties.
Making a decision to seek alternative living options is a difficult, even painful, one. Here at RCOC, we want you to know that options are available. The purpose of this guide is to acquaint you with those options, how they are financed, and how you can proceed if an alternate living arrangement is needed for your child with a developmental disability.
If you are considering an alternative living arrangement for your child, we strongly urge you to:
1. Call your RCOC service coordinator who will be glad to listen and to discuss the various options, as well as their pros and cons, to provide support as you make important decisions.
2. In addition, you can’t find a better listener than another parent who is facing similar issues. Please consider finding a parent support group with which you can share your questions and concerns. Check out RCOC’s Comfort Connection Family Resource Center both for support groups and a variety of other resources for parents and family members.
What kinds of living alternatives are available for children with special needs?
There are three basic options. Please notice that every option includes an extremely important word: Home.
All three options seek to provide a family setting in a family neighborhood…a neighborhood with kids and dogs and cats and schools and places of worship and shopping centers and parks and ball games. We do not have options that are “institutional.” They are all homes that offer special services and supports for children with developmental disabilities — homes that welcome and encourage your ongoing involvement with your child.
1. A home licensed by the State of California Community Care Licensing and authorized by the regional center to provide residential care and supervision services.
A licensed home provides specialized services and supports for children with developmental disabilities. In most cases, such homes have from one to five other children with special needs living there as well. The owner or paid staff members reside in the home to provide constant care and supervision, and they look forward to involving you in the life of the home.
There are many different homes from which you can choose. Each home specializes in something different, such as assistance with physical disabilities or behavior challenges. All homes help children learn self-care skills. More importantly, all homes include your child in the life of the surrounding community.
2. A foster care home certified by a licensed foster care agency.
These homes are similar to Community Care licensed homes, but generally have fewer children — sometimes only one or two — with special needs. The foster parents and their children become another family for your child. Still, you are encouraged to be as involved as you can with your child and with the foster family. You should think of the foster family as friends who will help you with your child as long as needed, and who will be happy for you and your child should circumstances allow you to reunite your family at some time down the line.
Children with special challenges can also live in homes that are certified by a foster care agency. In many cases, RCOC and the foster care agency will assist with providing special supports for children with behavioral challenges or other health or special needs.
3. An intermediate care facility that provides special health care or habilitation services.
These homes are licensed by the California Department of Health Services. If your child needs nursing care, ongoing supervision by a doctor or nurse, and/or habilitation and therapy services, this may be an appropriate option. Staff at such homes may have training in nursing, physical therapy, occupational therapy, or similar fields.
These homes are also small, caring for six or fewer children and employing clinical specialists who can provide care for children with complex health care needs. Every effort is made to ensure that the children living in these homes are included in the surrounding community life as much as possible.
How is all this financed?
Almost all children who move to a licensed/certified home will become eligible for Supplemental Security Income (SSI) and Medi-Cal, regardless of their family’s income. The funds provided from SSI are then used to pay for a portion of these alternative living arrangements.
Homes providing special health care or habilitation services and supports are funded entirely by Medi-Cal. When neither SSI nor Medi-Cal is available or is insufficient to fully fund your choice of living arrangements for your child, Regional Center of Orange County may pay for or supplement the amount.
Parents of minors do share the cost of care. As required by law, parents will be assessed a reimbursement or parental fee, on a sliding scale based on income and ability to pay. Parents are also expected to act as the representative payee for their child’s SSI benefits. This means that the monthly SSI check will come to your home and you will then pay the entire amount of the SSI check that you receive to the licensed/certified home in which your child resides on a monthly basis.
How do I find an alternative living arrangement for my child?
If you are thinking about an alternative living arrangement for your child, you should contact your regional center service coordinator. He or she will meet with you to discuss your concerns. Based on your family’s individual situation and your child’s needs, he or she will then discuss your choices and recommend the best available alternatives. One of our priorities will be to find a home in your own community so you can visit and be involved as much as possible in your child’s everyday life.
Then, you can contact and visit the homes yourself. We strongly encourage you to visit all of them. The more informed you are, the better choice you can make. Tour each home, talk to the other children there, and ask to talk to other parents who have children in the home. Is it comfortable and homey? Will the home be aware and supportive of your family’s cultural, ethnic, and religious background while caring for your child? You might find it useful to print-out copies of the When Choosing a Home worksheet when touring prospective homes. Although the worksheet was designed for adults with developmental disabilities, you may find it useful as well.
When you have selected the home you think best suits your child’s needs, your service coordinator will begin the process of referral. In some cases, it may be possible to arrange a one or two day stay for your child at the home — sort of a rehearsal to see if it is the best option for everyone.
Finally, a word of advice: finding the best possible living situation for your child can be a long and involved process. It may require patience and waiting for the most appropriate alternative, particularly if it’s not an emergency. But this is an important step, and few things are more important than assuring that you have selected the right home for your child.
What about quality of care?
Naturally, you have concerns about the quality of care your child would receive if he or she were living in a home. We can assure you that quality of care is RCOC’s priority as well.
Your service coordinator will visit with your child in the home at least once every three months. (A service coordinator will generally be at your child’s home more often because he or she probably serves other children there.) In addition, we have a staff of specialists who work closely with the homes in our area to keep them abreast of our expectations and to provide ongoing support and training. If the home provides care for children with special behavioral challenges, one of our psychologists may visit and provide consultation periodically; and if the home provides care for children with special health care needs, one of our nurses or our physician may visit and provide consultation. Oftentimes, representatives from other organizations such as Community Care Licensing and Health Care Licensing and developmental professionals have ongoing contact with these homes. It is also likely that your child will be in school. Teachers are trained to look for any problems or potential problems. In short, many eyes will be watching to ensure that your child receives quality care.
In all cases, you will be encouraged to continue to take an active part in the life of your child. This includes not just your child’s new living arrangement, but also his or her special education needs. Your observations are most important and we will count on you to let us know if you see anything that requires us to provide technical assistance for the home.
What do I do now?
If you are interested in seeking an alternative living option for your child, or just talking about it, please call your RCOC service coordinator. We’re here to help. You might also find it useful to print-out a copy of our Living Options chart, a quick reference guide to all of the out-of-home living arrangements available for children and adults with developmental disabilities.