Case Studies: Issues of Waiting Lists and Transition
Each year UCP includes case studies in The Case for Inclusion to highlight policy or practice trends that are impacting Americans with intellectual and developmental disabilities.
This year’s report highlights two case studies:
- Wait No More – how states that are being transparent with and managing their waiting list (as well as strategies and model legislation to make your state’s waiting list transparent and, ultimately, smaller); and
- the latest evidence-based strategies to help young people successfully transition into an enriched adulthood complete with work, postsecondary education and a full quality of life.
Wait No More: A Detailed Strategy to Eliminate Your State’s Waiting List
Ever since UCP started its groundbreaking Case for Inclusion ranking in 2006, each State’s waiting list is the area that gets the most attention by advocates and family members. Recently, one family member inquired about which States do not have any waiting lists because she is thinking about moving her family to another State to get better services for her son. Reactions like this to the Case for Inclusion waiting list data are common.
Some States have done better than others over the past decade in reducing or eliminating waiting lists. Regardless of size, waiting lists remain frustrating and elusive to many advocates. Battles for additional funding to “buy down the waiting list” (which makes it sound as if policymakers are negotiating a discount rather than bettering people’s lives) are perennial in State legislatures.
As part of this year’s Case for Inclusion, UCP wanted to empower advocates, family members and policymakers with greater insight into how States manage waiting lists and to advance a legislative public policy strategy to provide a path to ultimately reduce and then eliminate waiting lists.
This case study seeks to do just that: learn from how various States manage and publicize their waiting lists and then combine these lessons with a comprehensive and multi-year legislative strategy to end a waiting list.
- Personalization and Prioritization
#1 – Transparency
Knowledge is power but withholding knowledge is even more power.
In many State Medicaid programs serving those with intellectual and developmental disabilities, this truism is not just known but it is a preferred business practice. When a State does not maintain a waiting list or maintains one with minimal or outdated information, that withheld knowledge means that advocates do not have the tools to adequately define the scope of the need and family members waiting have no sense of context of when their need may be addressed. In addition, legislatures do not necessarily have all the information that enables them to make sound, evidenced-based legislative decisions.
It doesn’t have to be this way.
In many States it is not.
In all States it should not.
But what should be done. Some States – even those with large waiting lists – are leading the way in how that waiting list is publicly maintained and what information is provided. Alaska is a State that maintains a large waiting list, in comparison to the size of its program. But it does so with a high degree of transparency. That is not an accident. The Alaska statute is very explicit about which seven detailed areas the State must annually report to the legislature and the public:
- Purpose of waiting list (including individual’s rights);
- Process, ranking criteria and management of waiting list;
- Basic demographic information – age, sex, racial and ethnic background by region;
- Level of need and services and supports required;
- Individuals removed from the waiting list during the past year by number and reason and length of wait;
- Number of individuals waiting more than 90 days; and
- Annual data from the Department of Education about students with ID/DD including those graduating, those dropping out, and those turning 22 years old without graduating.
The Alaska waiting list is now called the Registry, implying it is the first step to getting services rather than a forgotten wasteland where a person may be kept waiting indefinitely. Looking at the 2013 report compared to the 2006 one, one learns that:
- The number of people on the waiting list has dropped to 613 in 2013 from 1006 in 2006, a drop of 39%.
- The number of kids on the waiting list (those under 22 years old) has dropped to 431 in 2013 from 818 in 2006, a drop of 47%.
- Most of those on the waiting lists are under 22 (70%).
- The average wait time for someone on the waiting list is 41 months (about the same as it was in 2006 at 38 months).
- It would require $23 million in State Medicaid funding to meet the annual need for the waiting list, and these taxpayer costs are broken out in detail by type of service and number of people needing that service.
- In 2013, 363 people moved off the waiting list (59% of the total waiting) during the year, showing how dynamic the Registry is. Most of those (209 or 34%) were moved off the waiting list because they received services. Those individuals spent an average of 25 months on the Registry. Another 119 were unresponsive to information requests to update their status.
The report further breaks down the waiting list by region, gender, and age in much more detail.
This compares to another State such as Utah. Utah publishes an extensive annual report (2012 edition) of services provided by its Division of Services for People with Disabilities. That report has some detailed service information and a fair amount of historical data. However, its waiting list data consists of one page with six charts and no detail, unlike that provided by the State of Alaska. That is, in part, because the Utah Division decides what data and level of detail will be provided, and that can vary from year to year. That lack of transparency in one place means that advocates and family members do not readily have the tools to understand the need on the waiting list and then advocate for funding or prioritization of those needs. In its defense, the State of Utah does host extensive dashboards of services provided and of people waiting by service. But this information is still not as comprehensive on those waiting as that provided by Alaska. But despite Utah’s lack of transparency, it is still more comprehensive than what Minnesota provides. Its annual waiting list report is simply a list of the number of individuals waiting by county, with no further detail.
To have full transparency, advocates should work with State legislators to have the following waiting list model legislation, built off the Alaska statute, passed into law in their State:
An Act to Create a Transparent Waiting List for Those with Intellectual and Developmental Disabilities in Need
[To amend State statute delineating the duties of the Department serving those with intellectual and developmental disabilities]
When State funding is not adequate to meet service needs, the department shall establish a waiting list, to be called the registry, for persons with developmental disabilities who would be eligible to receive State-funded services under [reference relevant statute] if adequate State funding were available. The department shall, on an annual basis, review the waiting list and submit a report to the governor containing the information required under this subsection. The department shall send a copy of the report to the persons chairing the House and Senate finance committees and the persons chairing the House and Senate health, education and social services committees and shall notify the full legislature that the report is available to all legislators. The report must:
- describe the purpose for the waiting list and the strategies used to notify persons about the waiting list, and must include a copy of the information used by the department to inform individuals and families about their rights and responsibilities under [relevant section of State law];
- explain how an individual is placed on the waiting list, what criteria determine rank on the list, with at least quarterly updates to such assessments, and how the waiting list is used to select individuals equitably and fairly across the State;
- give the basic demographic information across all regions about the age (under 22 years old, from 23 to 39 years old, from 40 to 59 years old and more than 59 years old), gender, and racial and ethnic background of the individuals on the waiting list;
- identify the level of need and preferences of the individuals and families on the waiting list for the services and the supports that may be necessary to meet their needs and project an annual cost to meet this need and show these costs by age and length of time the individual has remained on the waiting list;
- identify how many individuals were removed from the waiting list during the 12 months covered by the report, why they were removed from the list, and how long the individuals had been waiting for services or supports before they were removed from the list, shown by age;
- list the number of individuals who have been on the waiting list for 6 months, 12 months, 24 months, 36 months, 48 months, or more by age and with an account of the department’s steps to regularly review each individual’s status while waiting for services or supports;
- report annual data from the [education department] about the number of students in special education with developmental disabilities graduating from high school, dropping out of high school before reaching age 22, or reaching age 22 without graduating from high school.
#2 – Personalization and Prioritization
Transparency gives advocates a complete picture of those on the waiting list. However, the challenge with advocates mobilizing in support of prioritizing services for those on the waiting list is that the State solely maintains that list and the contact information of those on it. That greatly limits the ability to easily educate the family members and those on the waiting list. Without this, the ability to influence the department, the governor’s budget staff and legislators is greatly diminished.
UCP affiliates have shown how informed individuals, advocates and family members can accomplish great things. The same would be true of those on the waiting list. But more than that, those on the waiting list need to access the same accountability structure that those actually receiving HCBS services have. That is why states should be required to refer all those individuals approved for the waiting list to the Protection and Advocacy Systems that ensure the legal rights of those receiving services are respected. In addition, the primary care physician for the medical services that Medicaid is funding should be informed of the fact that his or her patient is on the waiting list and of that patient’s rank on the list. This will ensure that if the physician has information that may affect the State’s determination of the patient’s rank on the list, then the physician is aware and can follow-up with the State to provide more information and context.
It is vital to humanize and personalize those on the waiting list. The perennial fight for additional funding for those on the waiting list is made so much more difficult when the media and advocates are limited in finding real people languishing. But the physicians and Protection and Advocacy Systems, receiving permission from those waiting individuals and working with their family members, can tell their stories in the media and mobilize them to testify before the legislature and to contact policymakers in support of prioritized services and funding. That personalization and prioritization is vital in any public policy reform strategy. The challenge is for advocates to be able to rise above the noise of other pressing public policy issues facing the governor and lawmakers. The best way to do that is to put a face – or dozens of faces – on the situation. The best faces are those who are in the greatest need and who have been waiting the longest.
In 2007, UCP published the Plan for Inclusion, a detailed strategy on how to advance public policy reforms in your State that improve the lives and services for those with intellectual and developmental disabilities. This Plan includes detailed strategies and tactics that allow advocates to personalize and prioritize the people that would be helped with additional funding to reduce the waiting list.
# 3 – Persistence
Now with the information to understand the waiting list (Transparency) and the structure to Personalize and Prioritize, the last step is Persistence. Public change and additional funding to reduce the waiting list does not happen overnight. Medicaid was first established in 1965, fifty years ago. Waiting lists have been an issue for a long time. However, as with so many initiatives, it requires persistence and sustained effort over many years to accomplish something as important and monumental as reducing and eventually eliminating the waiting list.
There are several complimentary public policy approaches to reducing the waiting list:
- Partner with the Department on a de-institutionalization initiative and use any fiscal savings to reduce the waiting list.
- Pass budget language or a law that any Department surplus funds or lapse balance at the end of the fiscal year be automatically redirected into reducing the waiting list in the subsequent year
- Build long-term relationships with legislators in both chambers and of both parties to announce and champion a multi-year strategy to reduce the waiting list (many policymakers are looking for a cause and this is a non-partisan one).
- Host a Wait No More Day at the legislature or off-session legislative visits with waiting list families to personalize those waiting for services.
- Share your successful strategies and tactics with UCP so that together we may replicate your success and, in turn, use these approaches to successfully reduce waiting lists in other States.
- Celebrate each small victory or incremental progress (rarely in politics does big change happen all at once. It is often the sum of several incremental steps that together is monumental or transformative over a four or five year period).
Most of all do not be discouraged. This is noble important work. It is best done by those passionate about those impacted. Public policy change is always accomplished by a vocal, effective small group of people. You can play an important role. This case study gives you the background and strategy to advance a major change in your State through a series of small, doable but strategic steps.
Transitions: The Proven Parenting and Programs to Help Kids with Intellectual and Developmental Disabilities Become Happy, Productive, Engaged Adults
Life is hard. Change is harder. Everyone struggles with transitions in life. Young adults with developmental disabilities are no different.
And yet, they are. The consequences of bad transitions can be greater and longer-term for those with developmental disabilities, even compared to those with other types of disabilities or challenges.
“Youth with intellectual disabilities are more likely than youth with learning disabilities or emotional/behavioral disorders to stay in school until they age out of eligibility for special education services at age 21 and much less likely than almost all other youth with disabilities to earn a regular high school diploma.
Individuals with intellectual disabilities typically require lifelong support and are often at risk of being excluded from participation in society.
Indeed, most recent reports of the post-school outcomes of youth with intellectual disabilities have found that these youth are less likely than youth with other disabilities to attend postsecondary education, work, live independently, or see friends at least weekly in the early years after leaving high school [emphasis added].”[i]
And they are more reliant on others to aid in (or undermine) this process.
Given all this, as part of this year’s Case for Inclusion, UCP wanted to dive deeper into the latest research and best practices on transitions. The goals are two-fold:
- To inform advocates and policymakers of key programming that supports better transitions for young adults with developmental disabilities.
- To empower parents, family members and young adults with developmental disabilities themselves of how to best support the transition from young adult to an adult with a full, inclusive and productive life.
There are many recent and in-depth reports on transitions. This case study will summarize major findings.
How does one define or measure a successful transition? One must have specific, measurable outcomes that approximate a host of softer, less measurable but desired outcomes – happiness, feelings of self-worth and a sense of a meaningful life – that signify a successful transition.
In 2005 and 2006, UCP struggled with a similar concept with how to measure inclusion as we were putting together the first Case for Inclusion ranking. We grouped key measurable outcomes that would signal an inclusive life – living in the community in as home-like setting as possible (as opposed to being isolated in a large institution), participating in work, and not languishing on a waiting list. In 2014, we expanded that list of outcomes to infuse person-level (and self-reported) feelings and behaviors that would be key indicators of an inclusive life – self-directing services and providers, regularly going into the community (church, errands, for entertainment, and for dining), having (non-staff) friends, not feeling lonely, feeling safe, and receiving health care.
The transitions research takes a similar approach.
To best measure a successful transition, researchers used a national longitudinal survey of parents, youth, teachers and school officials called the National Longitudinal Transition Study-2 (NLTS2) which ran from 2000 to 2009 (for those ages 13 to 16 at the start of the study) to chart four key outcomes to best measure a successful transition within four years after high school for 490 youth[ii]:
Percent Reporting within 2-4 Years after High School
|1. Employment||In any job, for any number of hours||41%|
|2. Postsecondary education||Enrolled after high school training||35%|
|3. Enjoyment of life||Answering “a lot” or “most” of the time to a survey question about how often the individual enjoys life||74%|
|4. Social interactions||Answering at least weekly to a survey question about how often the individual gets together with friends outside of organized activities or groups||72%|
So if those are the outcomes one wants for youth to have through a successful transition. What does it take to accomplish them? Using regression analysis, researchers identified key characteristics (demographic and family involvement) and best practices (formal school transition program activities) that had the strongest impact on a student having success in all four transition outcome areas. Even more interesting, was the extent of that impact.
Key Family Characteristics for a Successful Transition within Two to Four Years[iii]
|1. Employment||Parent expects employment||32x more likely to be employed|
|High family income||7x more likely to be employed|
|Completed high school||6x more likely to be employed|
|High functional academics||3x more likely to be employed|
|2. Postsecondary education||Parent expects employment||4x more likely to be enrolled|
|High functional academics||4x more likely to be enrolled|
|Parent expects postsecondary education||3x more likely to be enrolled|
|Medium family income||2x more likely to be enrolled|
|3. Enjoyment of life||Parent expects employment||6x more likely to enjoy life|
|4. Social interactions||Completed high school||12x more likely to be social|
From this, it is clear that families have a tremendous impact on the successful transition of their children into a full and rich adulthood. Most importantly, parents must:
- Expect employment for their child
- 85% of parents said they did
- Expect postsecondary education for their child
- Only 38% of parents said they did
- Ensure high functional academic skills are realized by their child
- Only 45% of students reported high functional skills in four key areas
- Ensure their child completes high school
- 81% of students did
And while having a medium to high family income helps with a successful transition to employment and postsecondary education, it is not the most important characteristic and clearly this is not something families can easily change. The other four strategies for parents listed above can be accomplished regardless of income and, often, regardless of location (urban or rural). That’s exciting and provides a clear, focused roadmap of how parents can lead their child into a successful transition and, ultimately, a full adult life.
Now, what about the student. What programming should the student receive that will equip him or her to transition successfully into adulthood? This same research asked that question and look at the key programming that aided in that transition.
Most Impactful Programs for a Successful Transition within Two to Four Years[iv]
|1. Employment||Received work experiences||5x more likely to be employed|
|Received youth involvement||5x more likely to be employed|
|2. Postsecondary education||Received family involvement||41x more likely to be enrolled|
|Received life skills instruction||9x more likely to be enrolled|
|Received youth involvement||2x more likely to be enrolled|
|3. Enjoyment of life||Received interagency involvement||12x more likely to enjoy life|
|Received family involvement||6x more likely to enjoy life|
|4. Social interactions||Received interagency involvement||2x more likely to be social|
Just like with parents, from this program list we can see the profound impact that particular services have on youth successfully transitioning. While this in no way is to suggest that other services are not important or helpful, this list clearly outlines those services most proven to help youth become complete adults. Sadly, some of these program services are not common. That means that a majority of students are not getting what they need to be successful.
In particular, those individuals who had the following programming outcomes enjoyed the best transition outcomes:
- Received work experiences
- As evidenced by percent of school day in work experiences
- Only 57% reported having work experiences
- Received youth involvement
- As evidenced by their involvement in transition planning
- Only 58% reported involving youth
- Had family involvement
- As evidenced by family involvement in transition planning
- 68% of families reported being involved
- Had life skills instruction
- As evidenced by student receiving life skills or social skills instruction
- 72% reported receiving this
- Enjoyed interagency involvement
- As evidenced by an adult service agency representative at the transition planning
- Only 43% reported having this involvement
If these are the five program outcomes that position students for a solid transition, then what are the best practices in these programs? Other research[v] answers this with the curriculum and teaching methods that best produce the desired experience or outcome.
Skills Taught or Outcome
|Functional life skills||Backward chainingForward chainingLeast-to-most promptingMost-to-least promptingProgressive time delayResponse prompting
|Work experiences||Computer-assisted instructionCommunity-based instructionConstant time delayLeast to most promptingMnemonics|
|Youth involvement (through student involvement in the IEP meeting)||Check and ConnectComputer-assisted instructionPublished curriculaSelf-advocacy strategySelf-directed IEP“Whose Future Is It Anyway” program|
|Family involvement||Training modules|
|Life skills||Response promptingSimulationsTotal task chaining|
|Interagency involvement||None identified|
Transitions are tough. But with the right parent expectations and evidence-based programming for their students, youth with developmental disabilities can have a solid transition to an adult life rich with work, education, experiences and relationships.
Sadly, we do not have state-level data on what portion of students have achieved the employment, education and quality of life outcomes indicative of a successful transition. That means, at this time, we cannot rank states based on how well they accomplish this.
The purpose of this case study is to be a starting point and to create a basic roadmap for parents and advocates of how they can help their student achieve a solid transition to adulthood. As UCP adapts and expands the Case for Inclusion in future years, we will look for survey and state-level outcome data that can successfully paint a better picture of how well states are facilitating transition and rank them accordingly.
[i] Papay, Clare K, Ph.D. and Linda M. Bambara, Ed.D. “Best Practices in Transition to Adult Life for Youth With Intellectual Disabilities.” Hammill Institute on Disabilities. December, 2014. Page 137. Available at: http://cde.sagepub.com/content/37/3/136.full.pdf+html
[ii] IBID. page 138.
[iii] IBID. page 143.
[iv] IBID. page 143.
[v] Test, David, Catherine Fowler, and Paula Kohler. “Evidence-Based Practices and Predictors in Secondary Transition: What We Know and What We Still Need to Know.” National Secondary Transition Technical Assistance Center. Revised October 2012. Available at: http://www.nsttac.org/sites/default/files/assets/pdf/pdf/ebps/ExecsummaryPPs.pdf