Twelve Years on the Waiting List: Why is it Taking so Long to Get Services for People with Intellectual Disabilities?

Wanda Felty with her husband and daughter. Felty is the Oklahoma DDS Waiting List coordinator.

After taking on my brother’s guardianship eleven years ago, I began attempting to educate myself to be a better advocate. The learning curve has been steeper than I had imagined, but I am grateful for the opportunity to become more informed. I kept hearing about the twelve-year-long waiting list, but I didn’t fully understand it, so I began attending some of the meetings held by Wanda Felty. I was fortunate she agreed to answer some questions for TulsaKids.

Wanda Felty lives in Norman with her husband and one of her daughters. She is the mother to three adult daughters and grandmother to seven grandchildren. Her middle daughter is 33 years old and was born with significant developmental disabilities along with complex medical conditions. Wanda works at the Center for Learning and Leadership, which is Oklahoma’s University Center for Excellence in Developmental Disabilities. She is also a Family Faculty for the Oklahoma LEND (Leadership Education in Neuro-developmental Disabilities) Program.  Wanda and her husband Rick launched one of the first campaigns to bring awareness to the offensive use of the r-word, www.therword.org. Wanda became the coordinator of the DDS Waiting List meeting in 2006 when the original parent creator asked her to take it over after the loss of her daughter. Wanda humbly accepted and hasn’t looked back once.

The DDS (Developmental Disability Services) Waiting List Meeting is a meeting created by families for families. It allows families to learn from each other, hear from leadership in our state, and share their family’s situation. It also is a place for state legislators to hear from families who have a loved one with developmental disabilities who need and want long-term supports for their loved one. Wanda remembers her daughter being on the Waiting List and thinking no one knows or even cares.

Since taking over as coordinator and facilitator of the Waiting List Meeting, Wanda has been dedicated to sharing the stories of families she hears from and offers support directly to the families waiting and promising that she will continue to advocate for everyone on the waiting list. She wants everyone on that list to know someone knows about them and someone cares about them. Wanda has always said she is just a mom. But what that translates to is that she is a mom on a mission to help as many people as possible in Oklahoma by advocating for services and supports to be available when needed and where needed. Because of her advocacy, dedication, knowledge, and skills, Wanda is considered one of Oklahoma’s leading experts in disability services and policy.

1. Would you please explain what the waiting list is?

There is a requirement for states who accept Medicaid funding for medical care. The requirement is that if a person needs an in-patient facility for medical care, the state must make it available to those who qualify.  These “in-patient” facilities include hospitals, nursing homes, or intermediate care facilities for individuals with intellectual disabilities. In the mid-1980s, Medicaid allowed states to “waiver” the in-patient requirement if they offered the same level of care at a lower price in the person’s home or community. This “waiver” is called home- and community-based services waiver.

Oklahoma has several of these HCBS waivers. The ADvantage waiver is to allow those who qualify for a nursing home to stay in their home or community. This includes adults with physical disabilities and those who are aging. The Medically Fragile waiver allows those who would be in a skilled nursing facility to be supported at home or in the community.

There are three available waivers in Oklahoma for people who would qualify for support in an Intermediate Care Facility for Individuals with Intellectual Disabilities (ICF/IID). These are the waivers through the Developmental Disability Services (DDS) at DHS. The three waivers are the Community Waiver, In-Home Supports Waiver for adults, and the In-Home Supports Waiver for children.

Of the three types of waivers, ADvantage, Medically Fragile, and the DDS waivers, the only one with a years-long waiting list is the DDS. There is only one waiting list for DDS services, and that waiting list is more than 12 years long and has more than 5,600 people waiting.

2. Who should apply to get on the list, and how do they do that?

DDS waiver is for anyone above the age of three who has an intellectual disability (IQ of 70 or below) and has needs that are beyond the needs of others in their age range. For example, a child who is five years old with or without a disability may still need help with bathing or making something to eat. But a child who is 12 years old typically would need no assistance in the bathroom or making a sandwich.

If we didn’t have such a long waiting list, I would suggest applying when the child’s needs begin to grow beyond what the family can provide. BUT since there is a more than 12 years wait, I would suggest that if the parents feel that their child may need life-long or long-term supports or help, they need to apply as soon as possible. I also want to say that I know many people with intellectual disabilities live independently in the community. Many are married and have their own families and do not need long-term supports other than what the community and their own family and friend network provides.

To apply for the DDS waiver, which would put the person on the waiting list, visit oklahoma.gov/okdhs/services/dd/areacontactinfo.html. You can request an application be mailed to you, or you can fill out the application online through that link.

3. What is the estimated wait time for someone on the list?

Oklahoma has chosen to process the application of those requesting DDS waiver services in the order the application is received. Because they work in the order the application is turned in, we can tell how long the waiting list is. They are currently working the applications that were turned in on July 15, 2009, which says the wait time is more than a 12-year wait.

4. Why is there such a long wait, and what is the solution to shorten that wait time?

The easy answer to why there is such a long wait…not enough money. That was the easy answer, but the truth is the waiting list is not the problem for people with developmental disabilities; it is only a symptom of the problem. The problem is that Oklahoma has not committed to supporting people with intellectual disabilities and their families with comprehensive, long-term, community-based supports and services. Beyond the waiting list, Oklahoma’s community-based provider pool of agencies has not expanded to ensure an agency will be available when a person reaches the top of the waiting list.

There is a national shortage of available and trained employees to provide the care a person needs when they receive the waiver. This also includes available employees for personal care, which is a benefit available through our state Medicaid plan. Our private ICF/IID programs typically only provide in-patient, long-term care to those with minimal or moderate support needs, thus leaving those with higher support needs relying for life-long care to their parents.

Oklahoma’s policy for “emergency” care, going to the front of the line to get waiver support, centers on one of three issues that must happen: 1) Is the person at immediate risk of being homeless or is the person homeless or 2) Is the parent/caregiver dead or dying or 3) Is the parent/caregiver abusing or neglecting the person.

Lastly, if a person is on the smallest, capped waiver, the In-Home Supports waiver, and they need 24-hour care to keep them safe and healthy, the majority of that person’s care is provided not by the waiver, but by the parent/caregiver. There is a policy that allows a person to move from the IHSW to the comprehensive, non-capped waiver, but that policy is interpreted to say the same as the emergency policy listed above.

I say all this to say again; the waiting list is not the problem. The waiting list is a symptom of the problem. The problem is that Oklahoma as a state has not committed to supporting and honoring people with intellectual and developmental disabilities by creating a long-term plan to assure comprehensive, community-based supports are available when needed.

5. Does Oklahoma have one of the longer waits for in-home services?

It is really difficult to compare state-to-state waiting list. Many states have a waiting list for specific waivers programs or services to people with I/DD, meaning different lines or waiting lists. Oklahoma has one line and one door for their waiting list. No matter what waiver the person wants or needs, they are standing in the same waiting list line. When the person reaches the top, 97% of the time, they are put on the smaller capped In-Home Supports Waiver. The few that are offered the larger, comprehensive waiver typically are already living outside the family home.

6. What kind of services are provided when your turn comes?

The Developmental Disability Services (DDS) waivers offer many supports not offered on our state’s Medicaid program. With the waiver, a person can receive habilitation services.  Habilitation is similar to rehabilitation. Rehabilitation is the process of regaining a skill lost due to an injury, illness, or other reason. Habilitation is the process of gaining a skill that has not been obtained. So habilitation training specialist (HTS) is a direct care professional working with the person to learn new skills to improve their independence as much as possible. The person can also receive job coaching, job training, employment supports, and access to employment services.

Additionally, with the waiver, an adult can receive transportation not only for medical care, but also community and recreational activities. If a person needs therapy for improving skills or behavioral support, those services are also available on the waiver. There are homemaker services and some family training.

7. Do you have any recommendations for what families can do while they wait for their turn?

There are two things that come to mind when thinking about what I would recommend a family do while waiting. Plan for the best life your child can have and advocate for all people with disabilities.

In order to plan for a good life, families need information and access to training that will help them see what is possible. Families need emotional support and connections to other families. Family-to-family support is underrated. While we all have a different life experience, it is information and support gained and the passionate understanding received from other families that can ease the mind and help along the way. And then families need their day-to-day needs met.

Advocacy starts by sharing their family’s story.  Every family should know who their state representative and senator are. Reach out and set up a time to meet, even if it is by Zoom or Facetime. Introduce your family and make sure they understand your current needs and your future needs so that your child continues on the path to a good life.

8. Is there anything we can do, such as write to our state legislators, to get the waiting time shortened?

Remember, the waiting list is a symptom of the problem. Advocate. Talk with your state legislators about what your family needs right now and what you envision your child needing in the future.  Ask them to be part of planning how Oklahoma will assure supports for people with I/DD are available across their lifespan.  Attend the next Waiting List meeting, learn as much as you can, and speak up.  I have always said the more we speak up, the louder we get. One voice is but a whisper, but many become a roar!  Join the roar!

The next DDS Waiting List meeting is scheduled for Thursday, December 2, at 1:30. The meeting will be held by Zoom, but registration is required. https://oklahoma.zoom.us/meeting/register/tJcudu-vqzIiGtE9_b0j0cY2ss5YJuZMSuTl.  It will also be shared by Facebook Live on Waiting in Oklahoma.